NATIONAL CENTER Series 4 For HEALTH STATISTICS Number 13

VITAL and HEALTH STATISTICS DOCUMENTS AND COMMITTEE REPORTS

Reportof the TwentiethAnniversary Conference OftheUnitedStates NationalCommittee onVitalandHealthStatistics

Discussion of three problems in the gothering and use of health statistics: guaranteeing the basic rights of individual data sources; determining current needs for these dota; and indicating ways in which National Committees can contribute to their development.

U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE Public Health Service Health Services and Mental Health Administration

Rockville, Md. September 1970 Public Health Service Publication No. 1000-Series 4-No. 12

F(.,r swle by the Superintendent of Documents, U.S. Government Printing Office Wushin:ton, D.C. 20402- Price 50 cents NATIONAL CENTER FOR HEALTH STATISTICS

THEODORE D. WOOLSEY, Directo?

PHILIP S. LAWRENCE, SC.D., Associate Director

OSWALD K. SAGEN, PH.D.,, Assistant Director /or Health Statistics Development

WALT R. SIMMONS, M.A., Assistant Director for Research and Scientific Development

, Medical Consultant

JAMES E. KELLY, D. D. S., Dental Advisor EDWARD E. MINTY, Executive O//icer

MARGERY R. CUNNINGHAM, in/orrnatiorz O//icer

OFFICE OF HEALTH STATISTICS ANALYSIS

IWAO M. MORIYAMA, Ph. D., Director DEAN E. KRUEGER, Deputy Director

Public Health Service Publication No. 1000.series 4-No. 13

Library of Congress Catalog Card Number 7~-605825 FOREWORD

The U.S. National Committee on Vital and Health Statistics was es­ tablished in 1948 at the recommendation of the First World Health As­ sembly to advise on matters relating to vital and health statistics and to promote and secure technical developments in the field of vital and health statistics. More recently the U.S. National Committee on Vital and Health Statistics was designated as a public advisory committee to the Secre­ tary, U.S. Department of Health, Education and Welfare. To commemorate its 20th anniversary, all the past and present mem­ bers of the Committee, and representatives of National Committees of several countries were invited to participate in discussion of some of the issues of the day in conducting surveys and collecting and using health statistics.

... Ill CONFERENCE PARTICIPANTS

From Left to Rightu Front Row. Dr. Clyde V. Kiser, Dr. Conrad Taeuber, Dr. Philip M. Hauser, Dr. I. M. Moriyama, Mrs. Margaret F. Shackelford, Dr. Edwin L. Crosby, Dr. Robert L. Berg, Dr. Edward R. Schlesinger, Dr. B. Skrinjar, Dr. C. Horace Hamilton Second Row: Dr. John Storck, Dr. George Baehr, Dr. E. F. Krohn, Dr. Franklin D. Yoder, Dr. Donovan J. Thompson, Mr. Fraser Harris, Dr. Meindert J. W. de Groot$ Dr. Everett S. Lee, Mr. Walt R. Simmons, Dr. Ruth R. Puffer, Dr. William R. Gaffey, Dr. Robert Dyar, Mr. Theodore D. Woolsey, Professor Bojan Pirc Back Row: Dr. Forrest E. Linder, Mr. Donald J. Davids, Mr. Walter J. McNerney, Dr. Paul M. Densen, Dr. Herbert E. Klarman, Dr. O. K. Sagen, Dr. Elbridge Sibley, Mr. Michael Reed, Dr. Odin W. Ander­ son, Dr. Halbert L. Dunn

Conferees not shown: Mr. Loren E. Chancellor, Dr. Brian MacMahon, Mr. Robert Parke, Dr. Eugene A. Confrey, Dr. Joseph T. English, Dr. Alice M. Rivlin, Mr. Lawrence Speiser

iv CONTENTS

Page . .. Foreword ------111 Conference Participwts ------iv Introduction ------2 Welcome byllr. English ------2 Mr. WoolseyGreets theConference ------3 Privacy snd Confidentiality in Collecting and Using Health Statistics ------3 Situations Involving Risk of Invasion of Privacy and Breach ofConfi­ dentiality ------3 Presentation by Dr. MacMahon ------­ 3 ~scussion ------5 Protection of the Rights of Participantsin Population Studies and Surveys- 8 Presentation by M. Speiser ------8 Discussion ------9 Issues in Confidentiality of Information,and WaysofAvoiding Breachesof ConffdentialiW ------12 Presentation by Dr. Taeuber ------12 Discussion ------13 Future Needs ------16 Needs in Healti Statistics ------16 Presentationby Dr. Linder ------16 ~scussion ------18 Needs in Health Services Resources and Utilization Data ------21 Presentationby Dr. Klarman ------21 Mscussion ------24 Needs in Demo~apMcStatistics ------25 Presentation by Dr. Hauser ------25 Discussion ------26 Health Data Needs and Uses in Formulating Public Policy ------30 Presentation byDr. Rivlin ------30 International Collaboration ofNational Committees ------31 Presentationby ~. Skrinjar ------31 Discussion ------32 Conclusion—Broad Conference Themes ------35 Appendix: Past and Present Committee Members ------36 Observers and Guests of the Committee ------39

Index ------40 THIS REPORT summarizes discussions thzzt took place at the 20th Anniversary Conference of the U.S. National” Committee on Vital and Health Statistics. Present and past members of the Committee met with invited guests, including foreign colleagues, to considev three problems of general concern to workers in the areas of demographic and health sta tis tics: (1) Whut steps should be taken to protect the basic humun tights of the individuals from whom the datu that yield these statistics are o btzained? Emphasized, on the one hand, weve the priwzcy rights of these data sources during the gathering, processing, and use of the statistics; and, on the other, maintenance of the confidentiality of the information se­ cured. The individuals right to pvivacy and societyts needs for infor­ mation must be reconciled. (2) What are currently developed needs i% (a) health statistics; (b) health swvices vesouvces and utilization &ta (c) demoqaphic statis­ tics; and (d) demographic and health statistics to fomuikate public policy? (3) How can wovk in the areas of demographic and health statistics, national and international, be adwmced by National Committees? Eight invited papers are pvesented in abbveviuted fovm along with sum­ mavies of the comments by assigned discussants and the main points made in extensive general discussions. TWENTIETH ANNIVERSARY CONFERENCE

OF THE UNITED STATES NATIONAL COMMITTEE ON VITAL AND HEALTH

Reported by John Storck, Ph.D., Consultant, National Centw for Health Statistics

Past and present members of the U.S. National Committee on Vital and Health Statistics, a public advisory committee to The Secretary, De­ partment of Health, Education, and Welfare, met in Washington, D.C., on June 3-5, 1969, together with some of their foreign colleagues to com­ memorate the 20th Anniversary of the Committee’s crest ion. The pres­ ent document is structured according to the Conference agenda. The following presentation emphasizes substantive points receiving considerable emphasis, and therefore omits many of the contributions of individual conferees. Since the document merely summarizes a dis­ cussion, it should not be concluded that either a consensus is implied, or even a full presentation of individual opinions. Some rearrangements, condensations, and minor editings were made. It is regrettable that this summary does not do justice to the spirit—even gaiety and verve—that enlivened the meeting and enhanced its solid foundation on the varied ex­ perience and sturdy intellectual grasp of those who shared its delibera­ tions. INTRODUCTION

The Conference was opened by its Chairman, factor in producing “a galloping inflation in the Dr. Berg, who outlined its scope and described cost of health care,” at double the rate of price its Conference- related publication plans, which increases in the rest of the economy. include the present summary and certain docu­ While the Federal Government obviously must ments on the privacy-confidentiality problem that participate in protecting and improving the coun­ may be of use in the collection and use of statis­ try’s health, the Federal strategy of investment tics. He also introduced the foreign experts at- in health is undergoing extremely close examina­ tending the meeting. Dr. Skrinjar conveyed the tion at the present time. The Nation’s health is greetings of the World Health Organization (WHO) too valuable to the country and to its individual to the National Committee. She called attention citizens, both immediately and as a future sourc~ to the fact that WHO is studying ways of fostering of increased productive capacity, purchasing; international collaboration by improving its in- power, and life satisfactions, to give point to tht: formation exchange service, and solicited the sup- thought that access to them should be limited OI­ port and cooperation of the National Committee ratione~ nor would any sector of the population in this effort. be satisfied if health efforts directed toward them were curtailed. We must develop better ways of WELCOME BY DR. ENGLISH delivering health by increasing the capacity cf both private and public health care resources. In his welcome to the Conference, Dr. English As an example, Dr. English pointed out that stressed the current situation in providing health 30 percent of Medicaid funds are supporting services to satisfy the country’s needs, and em­ nursing homes for the aged. The average length phasized the functions that the National Center of stay in these homes is about 4 years, and t~ ­ for Health Statistics (NCHS) must perform if cur- ically terminates in death. While this use sat­ rent and rapidly developing needs are to be sat­ isfies an important need and can easily be ju$ ­ isfactorily met. tified, there is also, for example, a real need 10 The Department of Health, Education, and deliver high-quality health care to mcxhers ald Welfare is presently developing plans extending children and young families, where the soci II through fiscal year 1975. Fundamental facts are and personal return in years of more healthy urgently required to give this planning a solid living would be very much greater. foundation, To an unusual degree, these facts must As the continuing and complicated integratt!d be of wide scope, detail, depth, and complexity if planning goes on, we must make certain that the the planning is to meet the countryis current and planning structure itself does not needlessly pro­ expanding needs. While purely health considera­ liferate after the earlier manner of the health tions are highly important, services structure. “When you have good data you have the first leverage for rational and solid evevy issue has to relate to the larger issue action. ” For such data the Department is depend­ of what is going on inside the country . . . . It ing largely on the National Center. But there i:: a is impossible to have domestic tranquility need for more than national data, or data concern­ in the land if the health care needs of the ing large sectors of the country. As workers ag[Lin Amevican people are not met. and again point out, they need data concerning tht:ir own communities. We can help here by conduct­ Our problems in providing for these needs ing area surveys to measure local needs, as re­ involve everyone, although they are more dramat­ cently has been demonstrated with respect to htm­ ically obvious among the poor. The planning prob­ ger and malnutrition needs. Because of the SUc­ lem has become more apparent and urgent be- cess of these surveys State Governors are row cause Americans are becoming more aware of asking us for technical assistance so that they can these needs and of the possibility of satisfying conduct their own surveys. Here too the Center them. Among other consequences, this has been a can help.

2 Needed also at the Federal level is a na­ organizing themselves into associations to handle t ional surveillance svstem to determine the nu­ the health problems of their areas. tritional status of our people. Here too the Center will help. The sampling must be of high quality, MR. WOOLSEY GREETS THE CONFERENCE since many may be inclined to question the find­ Mr. Woolsey noted that recent developments ings. Dr. English observed that the nutritional in public health have increased opportunities for surveillance system will probably be only one of helpful associations between the Center and other a number of major pro~lems on which the De­ agencies, including especially some of the newer partment will be seeking help from the Center. organizations in the Public HeaIth Service whose Some of these needs will call for expansions of missions have not yet been clearly defined. The statistical expertise. excellent use which the National Committee made Although we have a variety of ways for de­ of earlier opportunities has had tremendous in­ livering health services to the American people, fluence in the whole field of health statistics in we need many others. We also need more cooper­ the United States. Mr. Woolsey cited four exam­ ation between agencies. ples: the studies which led to the creation of We have learned that if you set up ~espon­ a continuing National Health Surve~ the long in­ sive and accessible comprehensive health terest of the Committee in a classification of care services, people will use them, includ­ diseases which could be used to develop multiple ing people who may not now be getting any causes— of death statistics; the Committee’s report cave at all. on medical economics; and its numerous reports Dr. English noted a growing percentage of the on fertility measurement, culminating in the rec­ country’s younger physicians wish to establish ommendation of a continuing fertiliW survey. themselves in ghettos and rural areas. More phy­ The Center has not yet been able to get funds sicians are participating in group practice, and to implement this last recommendation, although more who are working in poorly served areas are it is strongly supported within the Department.

PRIVACY AND CONFIDENTIALITY IN COLLECTING AND USING HEALTH STATISTICS

Three principal speakers— Dr. MacMahon, Mr. Speiser, and Dr. Taeuber-developed phases of this topic. Here as in other substantive discussions, each speaker was followed by an assigned discussant, be- fore the topic was opened up for general consideration.

Situations Involving Risk of The problems to be discussed arise when such documents are used in other ways, or by other Invasion of Privacy and persons, than were originally contemplated. i)reach of confidentiality While even the preparation of statistical tabulations from legally required documents may be regarded as invasion of privacy—since it PRESENTATION BY DR. MacMAHON necessarily involves perusal of the documents by persons other than those for whom they were Dr. MacMahon confined his discussion to intended—Dr. MacMahon held that there are ad- situations in the health sphere where vantages in not demanding the narrowest inter­ documents are created by or about an indi­ pretation of our rights to privacy: vidual and deposited outside his immediate In spite of the potential problems, few people control. Thwe may be a legal Yequirernent would argue against the need for State and for the existence of the document, ov the in­ Fedeval agencies to prepave statistical tab­ dividual may voluntaw”ly create it for some ulations from vital records and Census purpose that he himself has in mind. schedules.

3 Dr. MacMahon cited many instances of the guid­ ventive measures 40 years before identification ante made available to planners and researchers of the microorganism responsible for the disease, by routine statistical t~bulations, as likewise by Hundreds of followback studies involving man!’ closer study of more detailed. relationships: for health conditions related to many areas, have: example the impetus for our regional medical been used to investigate public health problems, programs directed against heart disease, cancer, As a recent example sponsored by the Nationa 1 and stroke; campaigns to reduce the special Center, health problems of minority groups or of partic­ postul questionnaires to samples of wome~ ular localities, as tuberculosis among Negroes, identified from birth certificates and infant cervix cancer among Puerto Ricans, water-borne death certificates ave providing previously infectious disease among American Indians; wide unavailable national cik!a on the relationship) variations in infant mortality rates between eth­ of fevtility and infant mortality to social ami nic groups and regions of the country, and even economic factors and to the motherts pre ­ the general leveling off in the United States of a vious reproductive histovy. decline in infant mortality rates that had extended Use of records for followback to the patier t over many decades; and most dramatically, light or other informants has been undertaken for on medical-care purposes or for the protection of the this centuvy’s remarkable epidemic of lung community’s health, as well as in research. An cancer-an epidemic which has cawsed more important instance, clearly requiring a breach c~f than a million deaths in this countiy alone in the patient’s confidence on the part of his physi­ the last 50 yeavs. The hypothesis that ciga­ cian, is the legal requirement for notification to rette smoking is the cause of this epidemic governmental authorities of certain contagious was sparked by the close correlation between and infectious diseases, including venereal dis - the increasing consumption of cigarettes and eases. the rising death rate from lung cancer . . . . Records themselves can be linked without It is questionable whether this trend would followback whenever they can be referred to an have been observed unless routine tabula­ identical origin, as to a person, family, busin.ess tions had been madefrom death cewtificates— firm, location, or other specific means of assc ­ certainly its extent could not huve been docu­ ciating separated pieces of information. Such link - mented. ages are now commonplaces in the business wor. d and also to the Internal Revenue Service, in tl e However, much more concern about invasion effort to cope with a rapidly increasing VOII.UTe of privacy is felt when the use of records re- of information about an ever-growing populatio I. quires identification of the specific individual. There are two general situations: when the rec­ The computer greatly enlarges our capacity o make record linkages. However, there are spc’­ ord is used to identify a group of individuals with cific reasons in the health area for an increased certain characteristics concerning whom addi­ tional data are sought (followback studies), and interest in record linkages: when the information on one record is linked to These include the countryfs greatly expanded that on another record pertaining to the same in­ effort in medical research in general, the dividual who does not know that the records are increasing recognition of the community’s being associated (record-linkage studies). In ei­ responsibility for the health care of its in­ ther instance, the records involved need not be dividual members, and the shifi in concevn vital records; for example they may be hospital from the acute infections to the chvonic di.;­ records, or records obtained from disease or eases which have insidious onsets and oftm other registers, or the records may come from intevwzls of several decades between the OJ:­ nonhealth-oriented sources. currence o.fcausative events and the appew’­ John Snow used the followback technique ance of clinical disease. around 1850 to demonstrate that cholera was be­ Over such long periods memory of possibly cau gal ing transmitted through London’s water supply in events is a poor substitute when records mi ~ht certain areas. His studies enabled effective pre ­ be available.

4 The potentialities of record linkage in the raise impovtant issues of privacy-including health field have hardly been tapped. With a rou­ philosophical questions as well as the prac­ tine system linking the major sources of medical tical problems that would amuse from re­ data, one might learn much about the long-term strictions of access to files and limitation of outcome for infants exposed to special circum­ access to authorized personnel. In my own stances during pregnancy and delivery, and opinion—and this is no more than a guess— trested indifferent ways; the long-term effects of a the opening up of the Social Security System child’s environment on his physical and mental fovmedical research purposes would be pev­ health as an adult; the later mortality and hos­ haps the most significant advance in the uti­ pitalization experience of groups of persons inad­ lization of routine records that might be con­ vertently exposed to suspected noxious agents; templated at the pvesent time. It is also one the illness experience of persons whose occupa­ of the most sensitive aveas. tions expose them to suspected toxic substances; In Dr. MacMahon’s judgment, the opening up of the long-term mortality of persons receiving dif ­ the Social Security files for medical research- ferent forms of surgical or medical therapy; and of course under stringent safeguards— “would the risk of occurrence of specific diseases in the lead to an advance comparable to those brought parents, children, and siblings of affected individ­ about by the work of Graunt or Farr, and by the uals. Centralized record linkage also would creation of the National Health Survey in 1957. ” greatly facilitate diagnosis and therapy in pro­ viding medical care. Through the operations of Discussion the Follow-up Agency of the National Academy of Sciences, based chiefly on the records of the mil­ Dr. Dyar, the assigned discussant of Dr. itary services and the Veterans Administration, MacMahon’s presentation, sought to identify the where filing of claims for veteran death benefits basic reason why so many are alarmed at the allows identification of over 95 percent of all vet­ proposed enlargement of available information eran deaths, the long-term effects of specific mil­ relating to themselves and their affairs. “It seems itary experiences and the possible relationship to me that the basic reason for concern is to be of these experiences to such consequences as summed up in one word, and that is the word subsequent risk of cancer have been studied. uncertainty.” In the spectrum of possible queries, The addition of birth certificates in the study of where does the need for privacy begin? Obviously the deaths of military veterans has enabled estab­ the answer will vary according to circum­ lishment of a roster of twins, on which a consid­ stances. What is a sound working definition of erable number of special studies already have confidentiality? Further, how much information been based. does society need? Where should the right of the The present decentralization of records in individual take precedence over the needs of the United States imposes serious limitations on society? the use of record linkage. Here arises one rea­ We are uncertain also as to the bases on son for various proposals aiming at a more uni­ which our actions rest: fied national statistical system. One step forward One of OUYweaknesses as health people is would be establishment of a national death index that we have limited our discussion to our- permitting identification of at least the time and selves, and have not involved others who place of death of indexed individuals. This would might make a major contvilrution here: the help at least to locate where the records of those lawyer, the philosopher, the sociolo~”st, and included are filed, and at a minimum would help particularly the consumer himself. to clear files of these names. A more fundamental solution, at least for the employed population, The problem is aggravated because we are would be to make the data on Social Security rec­ living in a society that is undergoing changes in ords available for medical research. To do so, its values. There are discrepancies between however, would standards of individual and public conduct. We

5 are apprehensive concerning our legal rights. At this point a number of speakers suggested We may even be worried by the ingenious rea­ the possibility of “trade-offs” as between private sonings of epidemiologists. “There is a whole new demands and public needs. Central to this would group of technologies and methodologies that be the need for a “broader understanding of what heightens apprehension.” People worry about we are up to”: computers, case registers, data banks, and infer­ ences drawn from combinations of records. OuY profession has failed to explain to lhe public that there is such a thing as collect­ We are going to have to devote some of ouv ing information for geneval use: not fo~ the efforts to the resolution of the uncertainties sake of doing something to the individual OY that suwound situations involving the risk of about the individual, but rather for the sake privacy invasions. This is especially neces­ of assembling a mass of information which sary when they velate to uncertainty of policy is going to be used without any direct refer­ on the management of data, and secondly with ence to the individuals who provided the in- ~espect to the ways in which the consumer formation. or the public may be involved in the making of policy and in decision determination. It was emphasized, however, that this did not In the ensuing general discussion Dr. Hauser quite cover everything. The public wants both not described the fear about invasions of privacy as to be tattled about and not to be annoyed: “a cultural atavism not relevant to our present- day metropolitan mass society.” It is associated I think a lot of the public objection now to in­ with a fear of government, which needs more in- terviews and questionnaires is not that they formation as a basis for policy and action and ave afra;d somebody else is going to find out evaluation of ongoing programs. Actually, the the answer. They are just annoyed at being private sector much more than government is asked too many questions too many times by actively and even viciously infringing on our pri­ too many people. It is an inwsion of PriwcY vacy, as in the passing around of credit information even if they are completely assuved that no- and misinformation without any controls whatso­ body will evev see their answer besides the ever. It is true in government also, however, that interviewer. attention needs to be given to control agencies accumulating dossiers about individuals with in- The Office of Management and Budget, Office of adequate critique of the statements that are Statistical Policy was established in part to pre- allowed to enter the files. vent undue annoyance of respondents. Dr. Hauser noted that statistical files are Other questions arise with respect to the at.. subjected to controls, checks, conformance re­ curacy and fairness of the information lodged quirements for accepting data, et cetera. In con­ even in statistical files. It was suggested that any trast with a defensive position, therefore, “what person should have the right -to learn what in- is needed is a very positive and aggressive pro- formation is located against his name “and t() gram to provide the general public with an edu­ respond to the record keeper with such correc­ cation on the actual situation. ” tions as may be necessary.” This becomes es” Dr. Gaffey felt that we should meet “the prob­ pecially important when a record is used not on~~ lem as it is perceived by most people,” which is to produce statistical information, but as legal 0- based partly on such reactions as a vague gen­ other evidence of particular facts. Not discusseli eral opposition to things like computerization. were the problems that might arise if record; The present clumsiness of our record-keeping were freely open to inspection, or the obstacles system is a sort of de facto protection of privacy. to their evidentiary value that might be create ~ However, as the system is improved, “we must if they were liberally amendable. protect privacy by some sort of legal explicit It was pointed out that privacy invasion is ~ safeguard, or code of ethics, or what have you.” subjective variable:

6 What is an invasion of privacy to one person poena by the court, or by opening the medical may be completely inconsequential to anothev record to the insurance company through a con­ pevson. Also this changes with the times. The dition in the initiating contract. social scientists and legal scholars should Mr. Woolsey proposed that one ask what are come up with something bettev than these the ways privacy might be invaded by surveys, pvivate judgments. assuming confidentiality y has been assured. There would appear to be five ways in which the citi­ Perhaps the point of control should be located in zen’s privacy may be interfered with: penalties for the misuse of information. Dr. de Groot held that “the question of privacy should He is not left alone. Is this a dead issue in not be within the discretion of the public. They todayrs society? will tell everything, not only to medical men, but He is interrupted in his activities. to everybody.” There was considerable discussion as to who He may be irritated, as by the number or can now obtain certain specific kinds of health nature of the questions. records, and as to who should be able to get He can be frightened. “When people do not these records. The principle that medical records understand what you are doing they may be should be made available to patients only with the frightened. ” consent of his physician sounds reasonable; but many questions and problems would remain. Sometimes he is put to some expense, espe­ Would the permission be necessary to deposit cially when data are collected from establish­ the data in a computer? Is the physician equipped ments. to decide who shall use the data? Can a permanent In addition to seeking ways to protect the confi­ decision safely be made in what may be a chang­ dentiality of records used for statistics and re- ing’ situation? What would happen to medical re- search, this Conference might well address itself search if records are open or closed according to privacy questions like the above, leaving it to obscure criteria? In particular, would follow- to others to work out their legal expressions and back studies languish? Dr. Crosby discussed the ramifications. general question in terms of hospital medical rec­ Dr. Puffer sugge steal that the legal aspect of ords: such events as birth and death be separated from the additional information now included on the le­ To all intents and purposes, the hospikzl medi­ gal certificates but required only for statistical cal records are not confidential any more. In and research purposes. For legal purposes there addition to the privacy of the individual, the is a need for what might be called the fact of pvitxzcy of the physician is at stake in many death and the fact of birth, including of course instances because of the malpractice suits certain additional information such as names, now spreading tjzroughout the country. Then date, place of occurrence, et cetera. The legal too, about 75 pe-rcent of all patients admitted record would be open to the public. For analysis, to general hospitals in this country are cov­ as into congenital malformations, multiple causes ered by some form of insuvance, and the of death, and so on, much more is needed than commercial insurance companies aye insist­ is required for the legal record, involving med­ ing that the records become available to them ical records, hospital records, autopsy records, without the patient~s consent. and much else. While it is true that malpractice suits open Dr. MacMahon thought that permission to Up the patient’s record to the court only if the use hospital records for analysis might well be patient has entered an action himself and theoret­ obtained when the records first originate. “I ically only to the extent that the record is rel­ think that in fact both the people involved and the evant to the damages claimed, there are ways of physicians are amazingly free with the informa­ getting around this, as through issuance of sub­ tion when their cooperation is requested. ”

7 Protection of the Rights of Participants It is cleav that any compulsory questioning of Americans by the government about what in Population Studies and Surveys they have read and what books they kave i?. their homes, would be unconstitutional. Wkxa,? PRESENTATION BY MR. SPEISER is not clear is whether a voluntary govern­ ment survey would be unconstitutional, al­ Mr. Speiser accounted for the current con­ though my judgment would be against its va­ cern with the privacy problem by the increasing lidity. adoption, since 1945, of surveillance technologies that had long been available, although largely in In a free society, we are entitled to have less developed forms. These spread in use among “hidden ihoughts, hidden practices, hidden inter­ ests, H to live safely behind our “psychological law enforcement officials, government regulatory agencies, businessmen, civic groups, behavioral armor,” to be assured of “the emotional relit !f scientists, and others. Simultaneously the arrival of letting one’s hair down in private. ” Such pref­ of the computer entirely altered quantitative pos­ erences and requirements reach far beyond a~­ sibilities with respect to information collecting surances of confidentiality. and storing, at a time when American law and When we talk about the right of privacy, %]e public opinion were slow in adapting themselves mean the Yight of an individual to keep infor­ to the changing situation. As Westin has suggested, mation about himself or access to his pw­ this lag may have occurred because of delays in sonality completely inaccessible or secr?t the replacement of previously accepted assump­ from othe-rs. tions about decision making. It had been assumed Confidentiality, on the other hand, is co%­ that decisions were best arrived at by individuals cerned with the disclosure of certain info r­ using a combination of direct judgments of situa­ mation to another pezson for particular puv­ tions and abstract reasoning. This basis for plan­ poses. It is dependent on either an exprem ning began to replaced by a “predictive theory of or implied agreement between the two to Te­ information” centering around the massing of stiict the information to themselves. data interpreted through the techniques of statis­ The widely recognized doctrine of consent tical methodology. requires that permission to divulge inlormat ion The right to privacy, which Judge Thomas M. be freely given and that it be informed. Volunta ry Cooley in 1878 was first to call “a right to be let consent agreements alone”- a phrase quoted by Warren and Brandeis in a famous 1890 Harvard Law Review article do not really help much if theve is a disclo­ and by Brandeis in Olmstead v. United States sure beyond that agreed to, or if theve is an (1928)–even now is “being worked out on a case- invasion of privacy which is not warran led by-case basis. f! Hence as regards the rights of by the type of survey conducted. participants in population studies and surveys, Indications to respondents that a survey is volm­ “we do not yet know what they are. ” We do know, tary are often less than candid, leaving shadowy however, that Americans are very sensitive as suggestions of compulsion. to questions asked in certain areas, especially While the Public Information Act of 1966 by government agencies, One of these areas is makes Federal Government records and informa­ religion, although from 1850 through 1936 the tion more accessible to the public, it specif icitlly Bureau of the Census did make a half dozen exempts “personnel and medical files and simi­ counts of religious affiliation. Sex questions have lar files, the disclosures of which would consti­ been another sensitive area, as likewise details tute a clearly unwarranted invasion of persxmal as to reading habits: privacy.” Mr. Speiser next considered various pro- Mr. Speiser characterized this as “a combina­ posed techniques for protecting the public against tion of bad politics and poor thinking. ” information intruders. Imposing criminal penal- ties for breaches do not hold much promise, es­ Discussion pecially where the breaches have been made not for personal gain but in the interest of science The assigned discussant, Dr. Confrey, cited or social good. “Over-zealousness by statisti­ Alexis de Tocqueville and John Stuart Mill to show cians” probably would even less frequently be that the need to balance fundamental rights is no punished than over-zealousness in upholding the new problem in democratic societies. As liberals, law on the part of enforcement agencies. both staunchly believed in egalitarianism and Civil remedies against disclosures through majority rule, but they also saw that too great court actions for damages usually must prove ac­ emphasis in this direction could threaten indi­ tual financial loss or physical or mental suffer­ vidual development. They went on to a concept ing as a result of the disclosure; and such legal of balance as one of the continuing needs in a actions are slow and expensive. Injunctions democratic society. against future disclosures are of questionable Dr. Confrey circulated a document (dated value after the disclosure has occurred. In addi­ May 1, 1969) prepared by the Division of Research tion, a suit circulates the information, false or Grants, National Institutes of Health, entitled true. “Protection of the Individual as a Research Sub­ Administrative controls may be developed ject” which in seeking to maintain this balance to prevent breaches of confidentiality: in research conducted by the Public Health Serv­ Here in the District of Columbia, the United ice, Planning Organization has created a trustee- relies veYy heavily on a local committee at ship in which the three trustees are legally an academic institution to stwdy the protocol responsible for maintaining confidentiality of its research pvoject proposals to make and anonymity of those on whom information cwtain that the rights and welfare of the in­ is collected. It remains to be seen how this dividuals involved are adequately pvotected; will operate in pvactice and how effective it thxzt theve is sufficient and propar attention will be. to informed consent, and that the risks in As a final possibility y, an advisory committee the reseavch are outweighed by its benefits composed of statisticians, lawyers, representa­ or the importance of the knowledge to be tives of public groups, and others might be created gained. to determine how information is collected, what The booklet states that acceptable assurance measures are being taken to maintain confiden­ of compliance must cover the following: t ialit y, and what should be done to deal with indi­ vidual complaints against breaches of the system. t~~~temmt Ofpinciples concaning the treat­ Here as elsewhere, “it is the human equation and ment of human subjects. ” not the methodology that can provide the final Description of membership of the review measure of protection. ” committee, which “must be composed of suf­ In conclusion, Mr. Speiser spoke of ficient members with varying backgrounds to assuve complete and adequate review of the the seeming insensitivity of many sociul research, ” and not include any persons who scientists because of theiv feeling that be- aye involved in the Yeseavch activity. cause they are men of good will acting for the public good, neither their motives nor ~fDes~iption of the initial and continuing Ye- their methods may be questioned. The furor view procedures to be followed by the com­ ovw the proposed National Data Center is mittee.’t an example of the public concern which arose because of the apparent lack of conce?n of The position taken by the National Institutes government efficiency experts toward the of Health on the conduct of research attempts to right of privacy.

9 maintain balance. This has not been the case What does informed consent mean in these with all of those who have been warning the public sitzuztions? Is it enough simply not to say that their privacy is being endangered by almost that the information is required by law? Some any research whatsoever. Balance is not being say you mwst definitely tell the respondent maintained when the proposal for a national data that his response is not requived. If we do not system is characterized as aiming to set up a say this in so many words, I think most stat­ great expensive garbage pail. (Dr. Berg interposed isticians would agree that they get a large to say that McLuhan had called it “one big gossip enowgh degree of response to make the re­ column.”) sults valid; but what would happen to the olztn Mr. Speiser was asked during the ensuing if we made a specific statement of nonre­ general discussion whether confidentiality could quirement? Would the information become in fact always be maintained in court actions— essentially unusable? whether, for example, data on narcotism obtained Mr. Speiser replied that the Iaw on consent is by a sociologist could be subpoenaed when one currently being spelled out by the Supreme Court of his respondents was accused of a criminal act. in the criminal law field. After years of battling, He replied that this would depend on the law of in the famous Miranda case the Court helc the particular State. The common law recognizes only two confidential relationships—between hus­ thatthe police had to state, you have the right band and wife, and between attorney and client. to remain silent; anything you say can be usei Most States now include doctor and patient, while against you; you have the vight to have an some add religious leaders and their communi­ attorney; if you cannot aflord an attorney, one cants, or newspaper reporters and their inform- will be provided for you; and you can sto,b ants. Information collected for statistical pur­ answering questions any time you want to. poses certainly can be subpoenaed: Mr. Speiser felt that only research could deter- A judge may be willing to quash a subpoena mine the consequences that would flow from com ­ because he has the right to do so and con­ plete candor in the case of statistical studie:i, cludes that vavious social interests would be Dr. Hauser stated that, although he recogniz~ d bettev se-rued in that way, tit confidentiality that the American Civil Liberties Union is an e::­ is not othwwise protected from subpoena in sential part of our society—’ ‘we need this kind >f the absence of a specific statute. watch dog’‘—like any person or organization it can go too far. “I too think the key word is bal­ Mr. Speiser did not feel able to decide whether ance.” We are not acting in a balanced way if we a researcher might be subject to a damage suit if try to handle 20th century problems with 18th x he divulged confidential information under sub­ 19th century ideas. “This is to ignore the context poena. He felt, however, that the case would not in which the problem arise s.” By applying 1F,th be likely to arise; the researcher might be pushed century guarantees and limitations, perfectly rea­ by a subpoena threat, but not to the final point of sonable in their time, to organized crime in the its being issued. So too with priests; they are not 20th century, the United States has made itsslf likely to be required to disclose what they hear incapable of protecting itself against its deprecat­ during confessions, even in States where they have ions. A mass society needs to recognize ha sic not been granted the confidentiality privilege. rights possessed by the collectivity —includ ing Mr. Woolsey wondered whether the legal com­ security—which are of equaI importance with che pulsion to answer census questions had not been a individual rights emphasized by our Constitution: good thing so far as the public is concerned. “The questions certainly get far more public scrutiny, We must weigh the welfare of the puldic and Census has been more careful in the questions against the priwcy of the individual. He can that are asked.” But what of the thousands of be fully protected so far as statistics are purely statistical investigations where there is no concerned by the confidentiality requirement. compulsion to reply?

10 Mr. Speiser replied, “I don~t think you are run­ the key be located. IlThe president can resist sub­ ning with the tide there. ” poena, and he can resist Congressional pressure under the check and balances ystem. ” Information I think you are bound to be a loser on that. would be located in machine readable form in the The Bureau of the Census could vevy easily statistical system, separate both from the list of head off a great deal of criticism and save information sources and from the key which en­ some of the time spent in defending itself by ables these two to be united with each other. providing bettev justification fovasking ques­ tions rather than basing its argument solely This kind of system ha been working fov on confidentiality. yeavs in other contexts. Here it would be fimther protected by the separation ofpowers, Dr. Klarman doubted that the concept of balance and by the fact that the statistics are stored in the end would prove very helpful: only in machine-veadable form. Implicit in the notion of balance is the as­ sumption that ultimately there is a havmony In further discussion, Dr. Hauser suggested that of interest among the objectives of the par- data might be submitted in sealed envelopes, with ties. But there is the possibility that they personal identification appearing only on the enve­ may be in real conJlict. In that event balance lope itself. The system identification number for offers no satisfactory solution. Much better that person is put on the envelope, which is des­ is the ndion of bade-offs. To what questions tined for secret storage. The enclosed data, with must we have the answers? What questions the system identification number added to it, can we give up? To what questions can an­ enters the statistical file. Such a process would swers be obtained by other mechanisms? FOY make personal identification extremely difficult. example, perhaps we should require every- With respect to the Current Population Survey, one to file an income tux vetw+n, and stop maintained by Census without the compulsory pro- tvyinr to include income reporting in the vision, response is much higher than for private census. collection agencies. Of course most of the public assumes they must answer these questions, since Dr. Dunn proposed a double set of files: one they come from the Bureau of the Census. Re­ consisting of the statistical data, the other relating cently, because of the publicity, nonresponse has these data to their sources—individuals, firms, increased somewhat for the Current Population or whatever, This second file would be put under Survey, and considerably for some private sur­ ironclad controls. Dr. Berg noted that the District veyors. of Columbia United Planning Organization has It was noted that all the Census questions should established just this dual system. There is one file be on a comparable basis, so that they can be containing only the names of respondents, with related statistically to each other. Methods should their identity numbers, while the second file, ar­ not be mixed needlessly. It also was pointed out ranged by these numbers (and without the names), that Census has had to invoke its compulsory contains the statistical information. Mr. Speiser powers only very infrequently. Mr. Reed stated had briefly described this system, but now ob­ that about 80 persons had been prosecuted for non- served that “ironclad controls” are impossible— response on each of the last two United Kingdom “you cannot guarantee that the system will never censuses, with convictions secured in all cases. be broken.” Nor can you guarantee that the system The penalty ran from about two to a maximum of can be used only for statistical purposes, as op­ 10 pounds. Incidentally, birth and death records in posed to surveillance uses. You cannot guarantee Britain in no way are confidential documents: that the key code will not be subject to subpoena. Nor can safety be guaranteed against blackmail. Anybody who knows the name and date of birth Dr. Iiauser suggested a solution through use of anybody born in England ov Wales can dis - of a triple system. Let the ability to open the cover whether ov not he was ille~”timate, system at all be located at some place in the Ex­ whethev he was adopted. He cannot discover ecutive Office of the President, possibly in the who his natwal parents weve; that is confi­ Office of Statistical Policy. Here only would dential by statute.

11 General browsing in the records usually is not Issues in Confidentiality of allowed, although even permission to do this some- times is obtained by researchers. information and Ways of Avoiding Mr. Reed suggested that “Surely there is a Breaches of Confidentiality real difference between asking a person what his religion is and interfering with his religion. And so too with race.” Some conferees doubted this. PRESENTATION BY DR. TAEUBER He also thought that the data-collection agency might be made responsible, not to the executive, Dr. Taeuber focused discussion on informa­ tion collected by the Federal Government for but to the legislature. “The press also could make statistical purposes. Whether the information is a good trustee.” Other suggestions of an over- seeing group mentioned in the discussion were a obtained on a voluntary or mandatory basis, the collectors invariably seek to prevent misuse of general control commission and professional the data, by themselves as well as by others. Only association. In France, Dr. Guidevaux noted, only routine persons specifically entitled to handle the source information on the population is compulsory, in­ documents are permitted to do so, and disclosure cluding recently a few cultural and educational analysis guarantees that published compilations questions. On deaths, only the legal registration do not directly or indirectly reveal individual of death is compulsor~ the physician may entirely information. omit the cause of death. At the central agency in Replies to our decennial census are mandatory, Paris there is no way of linking a cause of death while the Current Population Survey is largely to an individual patient; if reported, it is on a sep­ conducted without the power to compel a reply. arate document. In both cases the same confidentiality and privacy In Yugoslavia, Dr. Pirc testified, all routine provisions apply. Thus with respect to the latter, birth and death data can be obtained from the local registrars. Whatever questions are asked in a Every proposed new inquiry is subjected to given year must be answered. carefil consideration from the point of view In Scandinavia, Dr. Krohn stated, the whole of essentiality, as well as the possibility that question is not considered important; open access the query would be considered as an imjiroper to records has never led to any trouble. Only de- invasion of individwl privacy by a significant tailed medical information is confidential. Yet numbev of people. Collecting information on copies of certificates including the cause of death possible public reaction is an important part are fairly freely available. Scandinavian countries of any pretest. have a unique registration number for each indi­ vidual which goes on every record pertaining to him. The provisions against disclosure of individ­ Dr. Berg stated that the Gallup organization has ual infonna tion make no distinction between found quite uniform refusal rates of about 5 to 7 gvodand badwses, nor do they gz”vethe Divec­ percent irrespective of country, in spite of the tor of the Bweau the option of deciding that a many differences in the availability of governmen­ piece of information might be wed to the ad- tally gathered data. vantage of the individual and, therefore, may It was suggested that statisticians should find be released to a third party without the prior out in what degree lack of compulsion in answering written authorization of the individtuzl con­ affects the data. cerned.

12 The Bureau of the Census hasestablishedspe­ and the image of treating individual information cial safety criteria that allow it to maintain con­ as confidential. ” fidentiality while making special tabulations based on Current Population Survey returns. When com­ Discussion puter tapes or punchcards are made available at locations away from the Bureau’s headquarters, The assigned discussant was Dr. Sagen. He they remain in the custody of Census employees, found the confidentiality-privacy problem simple even though names and addresses are not included, only on the surface. “Informed consent” for ex- so that inadvertent disclosures do not ensue. ample is a nice phrase, but what does it really After other records have been matched with mean? Again, how do we balance the right to pri­ Census information these records cannot be re- vacy against the right to know? In Missouri the turned to their sources, since unusual items on St. Louis Post-Dispatch got State legislation mak­ them might provide a basis for recognizing indi­ ing birth and death records completely open to viduals to whom specific census information ap­ publication, much to the chagrin of registration plied. Under the Census law, even the address of people. New York State has printed a release form an individual which was received in connection on the back of its birth certificates. The Tobacco with the Bureau of the Census activity must be Institute has been challenging survey findings treated as confidential. about cigarette smoking, and may want to inspect Identifying information in censuses dating the basic records. Photographers try to get the from 1900 and thereafter is never released to the names and addresses of all births in their areas, public. This sometimes irks genealogists. and the records can usually be obtained in local As the time for taking a census approaches, vital registration offices, even though they cannot special care is taken to let the public know that be obtained from the State registrar. Census schedules are kept fully confidential. Perhaps, Dr. Sagen concluded, we should have Thus a Presidential Proclamation in 1960 assured two vital documents for each kind of event: a legal the public that “There need be no fear that dis­ document of record, and a statistical document closure will be made regarding any individual including whatever information we think we need. person or his affairs.” In greater detail: Or Individual information collected in the Eight­ We could develop some direct way, by taking eenth Decennial Censws will not be used for advantage of computw technology, for report­ pu@oses of taxation, investigation ov regula­ ing the health information and the confidential tions, or in connection with military OYjury infomationfiom hospitals or doctors directly service, the enforcement of school attendance, to the appropriate statistical agencies. This the regulation of immigration, or the enforce­ would have othar merits besides preventing ment ofany individual State ov local law OY breaches of confidentiality. ordinance. In the general discussion, Mr. Reed saw prob­ Census has supported its confidentiality provi­ lems in setting up two birth certificates. As an sions by resisting subpoena in court actions. In example, the names of the parents certainly would 1962 Congress amended Title 13 of the United be needed on the legal document, but this imme­ States Code when a Supreme Court decision con­ diately identifies illegitimacy and adoption. cluded that a business firm’s file copies of its Dr. Sagen strongly advised that consideration replies to a Census questionnaire were not sub­ be given to keeping jurisdiction over bodies of ject to the same confidentiality treatment as the data decentralized while developing linkages be- original filed with Census. As a result they now tween the data. Those who are collecting the in- have the same confidentiality status as the original formation have the best knowledge of its reliability questionnaires. and the best understanding as to what data can be In concluding his paper, Dr. Taeuber stated released. It would be a virtual impossibility for that “the statistical system needs both the fact some super-agency to make good decisions of

13 these kinds over the entire data spectrum. It ing information such as number of beds, avera};e should not be imagined that local jurisdictions patient load, et cetera. The confidential part il(­ are incapable of maintaining confidentiality. In cluded such items as policies regarding admis ­ New York City for something like 25 years only sion of certain types of patient, the racial compo­ an official civil servant is entitled to know what sition of patients and others. cause of death appears on any particular death certificate. Insurance companies have challenged Dr. Linder questioned the wisdom of this deci­ this policy a number of times, but always without sion: success. In discussion, it came out that the policy originated in an effort to improve the reporting As soon as an agency has diffevent sets of of deaths from alcoholism, venereal disease, records, some of which aye confidential and et cetera. There was little evidence of improve­ some of which ave not, the pvinciple that the ment, except temporarily. agency is operating under s tvict confiden­ Dr. Sagen doubted that the National Center tiality is eroded. You cannot expect the pub­ should confine itself to information collected by lic to differentiate cleavly between what will its own mechanisms. “Should we not also take happen to ptxrticula~ pieces of paper. I think advantage of hospital records and other informa­ the Federal agencies are in their present dif­ tion collected for special purposes?” He also j?culties because they created this problem by thought that public policy on safeguards against not taking a clear and categorical position on the invasion of individual privacy should be ac­ the question of confidentiality. commodated to the public interest, particularly research which benefits all. With respect to the nursing homes, it would In the ensuing general discussion, skepticism not be enough to publish the names and ad- was voiced by Dr. Lee as to the wisdom of trusting dresses. To get a usefil list, you need to add to decentralization as a protection of confidenti­ something about the kind of place it is. Im­ ality. Too many people with low confidentiality y mediately you reveal charactwistics of the standards would be involved. Dr. Berg observed p.lute that the establishments may not wish to that two different kinds of problems are involved; have revealed, in ~elation say to income tax unauthorized use of a whole set of records is com­ mattezs or civil rights procedures. paratively easy, but finding records for particular individuals can be extremely difficult unless you Within the Fedeyal Government, when I was know the exact jurisdiction. Divectov of the National Center for Health Mr. Woolsey has found that unexpected diffi­ Statistics, we got vwy inadequate support culties arise in attempting to protect individuals from the Budget Bureau about maintaining a while also serving the public interest. Thus after policy of confidentiality. I think the problems the National Center had carried out the difficult that have arisen were brought about by the process of setting up a list of all the country~s lack of a clear policy position on the part of inpatient establishments to be used as a sampling Fedeval agencies with regavd to material frame for studies of the patients and the estab­ collected for statistical purposes. lishments, many—including some of the establish­ ments—thought the Center should make the list Dr. Crosby stated that the American Hospital public. They were being harrassed by others who Association releases its list of some 50,000 hos­ were also setting up lists. At first it was felt that pital trustees only by explicit permission of its the Center could not publish even the names and own Board of Trustees. The American Medical addresses of the establishments, since doing so Association has sold its list of physicians to a would violate the confidentiality assurance that commercial concern, and gets a royalty whenever appeared on the questionnaire. This aroused so that concern sells the list to one of its customers. much criticism that the questionnaire was divided Their list is quite accurate, and includes such in- into two parts. The public part gave the name and formation as whether this is a foreign practitioner, address of the establishment and certain identify­ et cetera. I

In reply to a question, it was stated that the Mr. Woolsey himself favored a clear separa­ Center probably receives more adverse reactions tion of the legal certification of vital facts from all from its followback studies than from its surveys. other information concerning these events, which The problem arises most often from death-certif­ should be kept confidential and used for statistical icate followbacks, and almost invariably because purposes only. Perhaps there should also be a it looks as if the Center was probing into a private public body to decide when proposed research matter: “Why are you bringing up this painful uses warrant the revealing of names for particular thing?” research purposes. In response to another question, it came out that there is no place where one can discover the We are a long way from being able to imple­ practices of various jurisdictions with respect to ment any such pvoposal. The system is under confidentiality y. This might well be a study on which the control of the States, and so far as health State registrars could help. The need is more for statistics ave concerned, the Center will not a summary of actual practices than for a state­ release names without their permission. ment of standards or goals. Dr. Krohn observed that statistical information Regrettable also is the dearth of investigations should not be so separated from the basic sources into the reliability of the information as to causes as to prohibit its undergoing correction when of death. “It is shameful that a 1936 study by that is necessary. Dr. Guidevaux found this a re­ Bellows should still be our source on the relia­ grettable feature of the French arrangement be- bility of deaths from venereal diseases.” cause it is not easy to query the doctor on an ob­ Dr. Berg saw a need to record present views viously inaccurate or incomplete diagnosis of on the privacy of the individual and the confiden­ cause of death. Perhaps the French physician tiality of information concerning him, as likewise would be more interested in giving the correct directions of change. In the area of legitimacy, for cause of death if he could obtain, sufficiently example, there have been recent impressive rapidly, useful data that helps him in his work. changes, which have gone even further in some Mr. Woolsey commented that the discussion countries than in the United States. We can our- confirmed the judgment that the treatment of vital selves do something toward assisting in the de­ records in the United States is in a pretty bad velopment of a clearer and sounder doctrine of mess: individual privacy: I think it would beappvopriatefov the National Committee either to appoint a subcommittee I suppose what many of us have urged during itself or at least urge some othev group-pos­ the meeting is that there be a little move in­ sibly the Public Health Conference on Recovds ventiveness and experimentation in probing and Statistics— to tuke steps to investigate the boundaries of the privacy concept, in un­ this question thoroughly to see if we cannot covering what the needs of the public are, and bring about some change and gveatev uniform­ infinding out what the public will accept in de­ ity in the treatment of vital records in this veloping public information in the light of the country. vights of the individual.

15 FUTURE NEEDS

Three sessions, chaired by Dr. Dyar, were given over to consider­ ation of future needs in health statistics, health services resources and utilization data, and demographic statistics.

I I

Needs in Health Statistics Record linkage and data- bank solutions. —This is probably the most popular hangup. There is no PRESENTATIC)N BY DR. LINDER argument that science proceeds by relating spe­ cific variables, whether for descriptive studies, Dr. Linder did not try to give a full catalog of analytic studies, or to draw cause-and effect in­ future needs for health data, as being both impos­ ferences. If the variables you want to relate hap- sible and of little use, since neither the resources pen to be on different pieces of paper, obviously nor the ability of the statistical agencies could you should link the pieces of paper. But large- encompass all that is needed. Nor did he, really, scale data banks are the very antithesis of this have any suggestions as to what “the big thing” simple idea of relating specific variables: ought to be for the 1970’s. In thinking about that, he had concluded that the health statisticians “have How much automatic, elaboyate, routine ma­ a hangup on a few words. Maybe we ought to try to chinery is it wm%hwhile to set up to permit get rid of that first. ” you to interrelate vanizbles collected for dif­ Small area statistics. —This is a vacant um­ ferent purposes under disparate definitions brella term. The needs are different from one area and with widely vwyingdegrees of veliubility? to another, and “the ability of the health organiza­ tion in most small areas is not up to using much There is no way of doing ready-made research. in the way of small area statistics. ” “Research depends on formulating a hypothesis Family statistics. — llAs soon as you get ‘our and then collecting data aiming to prove or dis­ or five people in a family you get too many vari­ prove or throw some light on that hypothesis.” ables. The data break down into a multitude of Dr. Linder next considered some broad areas pieces too small for analysis.” in health statistics where he felt more work wa~ Lon@”tudinal studies. — Ignoring that they are needed. More attention should be paid to the fringw costly and difficult, !!Only a narrow and very %Ie­ of frequency distributions, as has been done witl­ cial group of studies requires the longitudinal infant and old age mortality. We need to look mor~ approach. ” Further, closely at the health of the poor, including hunger Like family studies, longitudinal stwdies are and malnutrition, but also at the other end of the hard to analyze. I do not think stutisticiuns scale. Perhaps the affluent are the ones who arc know how to analyze them. You get a tangled inflating the cost of medical care. We need alsc~ skein of individual histories that weave in to pay more attention to the fringes of the behav­ and out of diffevent classification categories, ior distribution: to the drug addicts, alcoholics, so that we end up analyzing cvoss-sectional persons with mental diseases, and more generallj’ cwts acvoss an observed population. Such those on the fringes of social behavior. problems are not solved by using a computer. I am thinking of the mentul limitation of com­ Multiple-cause anulysis is bound to receii e prehending a thousand different lo~”tudinal more attention. Although the new int ernationid histories weaving in and out of a dozen or list should help us to conduct multiple-cause ana ­ more categories. yses, the situation remains extremely complec

16 If you start your computer going with the first vinced himself that this would be possible so cause of death, cross-classified by the second far as births are concerned. In connection with cause and by age and sex, which is the mini- deaths, the data may have to be collected on some- mum amount of data needed for even a super­ thing like a 100-percent basis because of the need ficial analysis, you end up with a mountain of for information about rare causes of death. Yet papw. even here the possibility of an entirely new system An individual can approach this mountain with a deserves full study. specific problem and pull out the few cells of in- Dr. Linder next turned to the status of the health statistics organization within the govern- formation that relate to what is in his minx but mental structure. When in 1946 vital statistics what about the National Center? was transferred from the Bureau of the Census to How is it gving to deliver the entire mass of the Public Health Service, opposition was voiced material to the many $eople around the coun­ by the Director of the Census and by our col­ try who want to settle a multitude of specific league, Dr. Hauser. Their arguments were of two questions ?Difficult methodological and con­ kinds. The first was that the numerators and ceptual problems are involved here. denominators of death and birth rates should be in the same agency to guarantee uniform definitions Another area that has been neglected is envi­ of these elements. ronmental statistics, as distinct from statistics The second argument was really important. based chiefly on political areas. Should a statistical collection activity be located in None of the topics that Dr. Linder named im­ the agency that also has programming and execu­ pressed him as indicating the big thrust for the tive responsibilities in that area? “The Public next 10 years. Health Service has a vested interest in whether Dr. MacMahon told us yestaniay that the next the statistics show, or do not show, that it is quantum jump in health statistics might come doing a good job.” Dr. Linder testified that over from opening the social security recovds for his 10 years as Director of the National Center epidemiological wses. That might be ~efil, for Health Statistics, but I do not think a quantum jump will come The Public Health Service at no time at- out of the moldy old paper that happens to be tempted to influence the way we collected OUY in somebody’s file. The next qwantwm jump data, or the kind of interpretzztion we gave to will not come out of an opportunistic utiliza­ them. I cannot say quite as much for the Sec­ tion of material that was gathered for some retary’s office. There wewe times when they other pwpose. were a little unhappy with what the statistics Dr. Linder then recommended that the present ware saying. There were other times when vital registration system be abandoned as a source there was some otiection to the timing of a of new statistics: publication. I am not implying thut the vital statistics But, Dr. Linder continued, the possibility of system should be abandoned for legal pur­ being influenced “may have more reality in a more poses, for identification purposes, for all of subtle way”: its civil purposes. But maybe it is time to I have said many times that I did not cave as abandon the vital statistics system as a sta­ Divector of the National Centar whether the tistical system, and see if we cannot think of birth rate went down or the birth rate went something entirely new not connected with up; I did not cave whether everyone in the vital registration which will give us the kind country died or did not die. It uxzs merely my of material we need, and more material th.zn job to measure the rate at which they wet% we are now getting. doing these things. But the typical role of the Dr. Linder referred to earlier suggestions by statistician in the health agency is to be an Drs. Puffer and Hauser looking toward reforming attorney for the cause and for the program the vital statistics system. He had almost con­ that the health agency is responsible for.

17 Since it is almost unavoidable to take this posi­ quirement shouId be approached on the basis that tion, a truly statistical agency should not be it possesses certain epidemiological characteris­ located in any departmental unit having program tics. ” We should be able to get information from responsibilities; nor should it be located in the Medicaid and Blue Cross of the kind that comes Office of Statistical Policy or elsewhere in the from New York’s Health Insurance Plan. Not Executive Office of the President, “where it always can they tell us how many people they have would be most exposed to political pressures.” It in their programs, as distinct from the number of should be an independent agency, perhaps some- contracts they have written. This also is true of thing like the Federal Reserve System, where it most commercial insurance companies. Dr. need not respond to a demand to produce informa­ Densen suggested that if the need to conceptualize tion supporting any particular point of view, problems was strongly emphasized, it would not Finally, Dr. Linder emphasized the need for be necessary to train people to be welfare stat­ training health statisticians. The universities and isticians, health statisticians, and so on. schools of public health are not training health Again, in computerizing we need more concep­ statisticians in the quantity or of the type that are tualization. One of the difficulties in health care needed. At the University of North Carolina where programs is that people want to collect and cross- Dr. Linder teaches, substantial funds have been classify everything. “The computer can be very available for training biometricians. Now money inflexible in some kinds of situations.” What in- is beginning to flow into training of population formation do we want? If you mix what adminis­ experts. But there is too little money going into trators need to know on a day-to-day basis with the training of health statisticians. what is needed for research, you get a complex statistical system that does not answer the re- You can talk as much as you want about data search questions and interferes with the adminis­ systems for comprehensive health planning trative questions. We need in fact to examine the at the National and State and local levels, but nature of reporting systems as such: the people wko might collect data to feed inti these systems simply do not exist in adequate I httve my own bias toward collecting as little numbens. The schools and programs for as I can get by with to run the system on a training these people do not exist, and will routine basis, and set things up flexibly so not exist until 10 years after .Wstuntial sums that it is easier to get additional data or muke of money begin to jlow into training these changes in the statistical system when they kinds of people. are needed. There are even systems where the physicians Discussion must spend so much time on their records that il The assigned discussant was Dr. Densen. He interferes with taking care of their patients; ancl. said that one might differ with Dr. Linder’s views there is at least one jurisdiction in the Boston in a few places, but the emphasis on the need to area where a pregnant woman mwt go to four dif ­ conceptualize problems was absolutely right. We ferent addresses in filling out her financia 1 need to focus, not on the data, not on the collection eligibility forms. We need to think throughout in method by itself, but on adequately conceptualizing terms of the total system, in relation to all who the fundamental statistical aspects of our prob­ are involved, including of course the research lems. As an example of this need Dr. Densen statistician. ttyou need a good system as well a$; cited the Medicaid program. It is a financing good people to operate the system.” mechanism to provide funds for medical care of Dr. Densen had one question concerning Dr. the indigent. It is an insurance mechanism that Linder’s presentation. He had reason recently ti] happens to have a denomimtor. But it is not so go back to the Shattuck report and was struck IY7 much a welfare program as a social program, and the fact that Shattuck strongly emphasizes the line as such “conceptualization of the statistical re. between the statistics and service programs:

18 I can see your concern to attain objectivity. from all departments and as part of the Office of Pevhaps at the Fedeval level and even at the President.” Dr. Hauser also agreed with Dr. State and local levels you need an agency Linder’s strictures on training, but thought that with this characteristic. But if you get too this was a part of the general university situation fir away from the operating programs, you in relation to Federal funds. “There has been too may be~”n to concern yourself with unrealis­ much Federal money for specific purposes with tic things. At the local level pavticwlarly we strings attached, whether contract or grant, that need to relate our statistical activities to the have distorted training programs.” service progvams of the community. We must With respect to small-area studies, family not get ourselves into the position of think­ data, longitudinal studies and the data bank, Dr. ing that we ave collecting statistics for theiv Hauser agreed that some are using these tech­ oum sake, especially in the health. field. If niques irresponsibly, but thought that this was not something is not done to relate the statistics a good reason for throwing them away. Of course to action directed to improving the health of there are the difficulties that Dr. Linder empha­ the population, I fear greatly for the statis­ sized; we need to address ourselves to their so­ tical profession. lution. For example, Take the statistics that the National Center The type of analysis which demographers is gathering on the country’s smoking habits. They have developed in terms of the cohort anal­ show that a smaller proportion of the population ysis of fertility data is badly needed else- is smoking and that the age at which people start where and readily extensible to other forms smoking is changing. Can it be said that this of data. We need information that follows has resulted from the activities of the Public specific cohorts, not only with respect to Health Service and other health agencies? At their fertility experience bwt in rekztion to present one cannot say this. But it is important theiv educational experience, their entrance that the question be studied. Or take infant mor­ into the ?abov force and their vocational ca­ tality. This certainly is a field where we have lots reers, and on down the line through health, of information; welfare, and social security. But in a situation where the Negro vate is “Our job is not to despair in the face of such prob­ say twice the white rate and you are supposed lems, but to develop techniques for their analysis.” to do something, you ave stuck at the present Mr. Woolsey found himseIf pleased that his time. Heve we may need to go to micvostatis­ long working career of arguing with Dr. Linder tics and follow up the individual circum­ was not going to stop. On the question of small’ stances that surround individual deaths. area data needs, he found the disagreement “really At the present time, as Dr. Linder noted, we quite sharp.” do not have the statistical talent or know-how at To keep statistics from becoming dead, we the local level, We do have it at the National level have to keep them attuned to the problems of and in the universities—not necessarily in the today. Today we just cannot overlook the schools of public health. This talent should be made need for data to delineate and overcome the available in an effective way to operating agencies problems of the cities. U we neglect these and communities. One place of quick return for a relatively problems, we might as well forget about our statistical systems. They will never get the small investment is in summer programs for col­ lege students. “It galls me to find that the Fed­ support of the Federal Government. eral Government just will not put any money into So far as the vital statistics system is concerned, this area.” this means that we cannot go to a sample basis In the general discussion, Dr. Hauser agreed at the present time. Here we have one of the very that the Federal statistical system needs restruc­ few means for getting measures of health in the turing. He advocated “the equivalent of a central cities, including their ghettos and their disad­ statistical agency in the government, removed vantaged peopIe.

19 It is true that a lot of poor work has been done Dr. Dunn interpreted Dr. Linderts specific in the area of family statistics. When we get into comments on small area statistics and so on as the health economics, where families are spend­ suggestions that we should take a good hard look ing units, however, there is something that can at these things. He would agree; but to make a be handled. quantum jump over the next 10 years Dr. Dunn Longitudinal studies are often engaged in need­ thought we should apply ourselves substantially lessly, and they are undeniably difficult. But there to developing indices of health. There are, of are some questions that cannot be answered other- course, indicators of pathological conditions. We wise, as when one needs to discover the outcome also need to quantify wellness. The National Corn- I of a certain course of events. mittee took three study subcommittees to come I On data banks, Mr. Woolsey was in full agree­ up with the plan for the National Health Survey. I ment with Dr. Linder and would go even further: Two of its subcommittees tried to define wellness The two basic defects of the data bank have and never came up with an answer. Perhaps a third nothing to do with confidentiality or the in­ committee could do better. vasion of privacy. One is that it is a ve-ry in- Dr. Klarman thought that the experience in re- efficient way of producing and disseminating organization of the Public Health Service over the statistical information and is unfair as a last few years should serve as an object lesson. means of disseminating the information. “Don’t change the machinery unless you know what Some of the information will be controver­ you’re doing, and then hesitate.” sial, and because of cost considerations, will He agreed that we need to conceptualize, but be avuilable only to the well-heeled. held that there can be great differences in where we can go when we engage in the process. Dr. ‘ The othev defect is that you would have to Densen had stated that the basic problem statis­ deoptimize the individual systems to get the tically with respect to Medicaid lay in identifying degree of record linkage that is proposed. the denominator. But the statistician also needs These systems weve designed to sene par­ to know a great deal about the special, unique ticu.?hvpurposes, for which theiv classifica­ characteristics of the problem area and the in­ tions wwe established. You would have to stitutional arrangements that make a difference. change this to get the recovds linked. The number of people who tu?mout to veceive With respect to training, Mr. Woolsey thought health services depends very mwch on local that most would agree that training in health sta­ history, local tradition, what people are ac­ tistics has been largely shaped by the influence customed to getting, what ~overnment will of money from the National Institutes of Health @“vethem with some ease, and so on. When (NIH). we get new notions of what are. people!s With respect to the location of a central health rights, we can get marked discontinuities. statistical agency—say the ‘Center—there are There was no basis fwr getting a good esti­ subtle problems connected with location in an mate of the size and ckzaractwistics of the agency with a mission. “Nevertheless, I think we population that umuld be wsing medicaid. have been relatively free from interference. ” Mr. Woolsey thought one should balance the qual­ When different people conceptualize, they may ity and integrity of the data, which are extremely reach different concepts, Dr. Klarman concluded. important, against responsiveness to the needs Dr. Densen said that he would have a hard of users. time disagreeing with that. But instead of dis­ I think we have become more rele?xznt since cussing techniques and methodologies in general, we have been located in the Public Health he would prefer to sit down and talk over these Service in the Department of Health, Educa­ different understandings. tion, and Welfare than we were before. Also Mr. Reed found advantages in using the legal in the experience of at least some of the process of registration as a carrier of statistical countries, there have been seviows difficul­ information. Nevertheless the United Kingdom is ties whare there wus a central statistical experimenting with a medical register of births office. to be used to initiate medical services, which

20 will go to the medical officer in most areas, and Dr. Baehr observed that some schools are be- then to the central statistical agency. This appears ginning to concern themselves with demonstra­ to be similar to what was being proposed at this tions in medical care, using a population labora­ conference. tory as a basis for training. These are open to A strong school of thought in the United King­ physicians and others, including statisticians. dom favors an extension of medical record link- Dr. Kiser noted that the National Committee ages, including such records as hospital inpatient has a subcommittee on vital statistics revision records and first marriage and death records. under the chairmanship of Dr. Lee. It has decided At present the records would be linked only on to start from scratch, taking all aspects of the demand. existing system into account. Mr. Reed felt that the statistical agency should In some final remarks, Dr. Linder stated that be independent “to preserve its statistical virgin- what he was recommending was a more critical it y against the politicians. ” examination of certain techniques that have almost Mrs. Shackelford commented that the American become catchwords, and also a critical examina­ Association for Vital Records and Public Health tion of the vital statistics system as a statistical Statistics well recognizes that the vital statistics collecting mechanism. system is in trouble. It does not meet the extra needs and demands that are being placed on it by If you want a horse and buggy, we have got a the new health programs and the new concepts that home and buggy, and I do not think you need have arisen over the last few years. to attach a jet enga”neonto it. I was saying, is that what we want at all? Can we depend any A lot of us—and I identify myself with this longw on this slow and outmoded and very re­ group-feel that people are expecting to make stricted system that exists lazgely for legal more sophisticated uses of the vital datu puvposes? without giving enough attention to maintain­ ing the quality of the data, or to impvoving the quality and modernizing the system so it Needs in Health Services Resources can move adequately serve today’s needs. and Utilization Data Mrs. Shackelford added that the National Com­ mittee should “devote some attention to what we might call the plight of the vital statistics system PRESENTATION BY DR. KLARMAN in many of the States.” Dr. Pirc testified that there was a deterioration Dr. Klarman considered in turn data needed of the statistical activity in Yugoslavia when it for internal management, research, and planning, was located in the central statistical agency. The steering a course between asking for everything health agency needs the statistical agency every and asking for too little. He did, however, lean day. toward restraint. He gave more attention to the Dr. Thompson felt pessimistic about developing data needed for planning, since needs in the other strong health statistics training exclusively in a two areas are likely to be special and unique; university setting. A university can teach mathe­ neither problem lends itself at present to wide- matics and biology and other long-existing sub­ spread data collection on a routine basis. jects, butnotproblem solving. And it is probably For internal management one needs a budget wrong to suppose it should try. “If you want to in money terms and a program of operations ex- teach someone how to do something, the best way pressed in inputs and outputs. At this point the is to start them doing it.” Perhaps the training latter are units of service, not end results. De­ might involve both the university and a community partmental costs may be compared overtime; total hospital or other health agency. Students need to expenditures with budgeted expenditures; average face real problems, and not the artificial, synthetic unit costs with those of other institutions; et cetera. kinds of things they meet in schools of public Frequently data compiled by several institutions health or medical schools. for internal management can be usefully combined.

21 Planning is an obvious ingredient of internal Dr. Klarman now turned to data for planning, management so far as each single institution is where more generalization is feasible, and there- concerned; but area-wide planning is not simply the fore more routine data collection. Here he pro- sum of the plans of individual institutions. posed to apply the test of relevance: “If these In research we have needs that may be distinct data are collected, what are they good for? How from those of management and planning: would you use the data if you had them?” Typical planning reports in the health field In reseavch, data needs are set by the pvob­ include data on population size; age composition; lem under study— by the hypotheses to be births and deaths; a count of facilities and key tested and the vaviables of a model that ap­ health personnel; projections of population and re­ peav to offer a plausible picture and expla­ quirements. Also likely to be included are usc nation of real life behavior. Actually, how­ data by location; per capita use of services; the evev, data collected for management uses population’s income and educational levels; anc sometime serve as proxies fov the Yes eavch (in recent years) its mortality and morbidity b} data needed. diagnostic category. Research needs depend not only on the problem Yet no explicit connections are drawn be- under investigation, but on the approach. Thus tween the &tu and the policy recommetia ­ economists and political scientists are not likely tions. The vary presentation of the dati is to ask the same questions about a problem. assumed to suggest their germaneness, a:: There are two major problems in applied health if the connection was self-evident. services research today: Dr. Klarman questioned whether all thest: These are the marked acceleration in med­ data—” and more’ ‘—are needed in planning future ical care costs—perhaps expenditures would health services. Before seeking to determine what be the mwe pvecise term-ovw vecent data are required, we should dispose of three years, and the urgent need to bring health preliminaries: choosing a criterion for planning; care to the uvban poor. arriving at a functional model of the health sit­ uation in the light of our criterion; taking account Many studies could be set down under each of these of the implications for planning of uncertain y con­ problems, but a listing of studies would not give us cerning future population changes, preferences for a listing of research data needs. In addition to the services, and the supply of specialized factor:: different questions that would be posed by the of production. He discussed each of these matter$: several disciplines, in some detail. Datu needs aye specific not only to the prob­ Choice of criteyion. — The need criterion i[: lem and not only to the questions asked about usually espoused by health planners, while econ­ it, but also to the particular model to be omists generally favor the demand criterion, tested, which in twn depends in jxzrt on the Health professionals assume that they know findings of earlier research. and can state with some precision what serv - Difficulties in specifying data needs multiply ices a population should have. It then re- as research moves from the applied to more basic mains only to surmount the financial barviet” areas of concern. to achieve the indicated types and volumes of services. This would include most stwdies of the end results achieved from health services pro- Lee and Jones developed well-known techniques grams, as well as studies directed touxwd for translating pathological occurrences into formufuting priorities between health and quantities of services and for converting these other social goals, as likewise between into manhour requirements, which then are turn~ d health services and other inputs for pro­ into full-time equivalents in terms of the length moting bettev health. of the work week.

22 The professional jwdgment is intended to re­ This procedure, however, has one serious flect the biological needs of the population and difficulty at least for the time being: the current technolo~”cal capabilities of med­ icine. It explicitly disvegwds economic fac­ In one area of hospital use wheve an effort tors and also takes no account of psycholog­ has been made to compare the explanatory ical auxweness or appreciation of the Mue power of seveval models, it was found that of services. the naive model which projects jwesent w-se accounts for the lavger fraction of total var­ Among otkw consequences, it is implicitly iance in utilization. assumed that health services can claim an absolute pvio~ity on resources; that they al­ Dr. Klarman’s conclusion from this analysis ways combine in the same way with other was that the most useful data for planning are: semices to produce health; that the txwious 1. Rates of use by the several population resouvces combine to produce health services categories under various conditions of according to the personnel-to-population ra­ financing and organizing the delivery of tios; and that socioeconomic status has no health services; and bearing on the taste for or desirability of using health sevvices. 2. Projections of specialized facilities and manpower under explicitly stated alterna­ In Dr. Klarman’s judgment these assumptions tive assumptions. are questionable, and therefore “need is not a proper basis for health planning, so there is no He left specification of the population categories point in meeting the data requirements it implies.” and resources to be projected for further discus­ The demand for health service is a functional sion. relationship between quantities of services sup- In the hospital field, there is the further com­ plied at certain prices, which may vary according plication that the level of supply strongly influ­ to the prices of other products, incomes, and the ences the demand for services. “In the absence tastes and preferences of the population as stem­ of any observed ill effect on health status, this ming from its demographic composition. “In the means that almost any level of hospital supply real world, however, purchasing power is not within the known range is a valid level. “Perhaps located only in consumers. Government too can here the appropriate basis for planning “is some manifest demand by deciding to pay for some- measure of equality—equality of access to serv­ thing.” The demand criterion is more realistic ices or of use— within the particular community. ” than the need criterion: The uncwtuin futuve,— Health service plans typically look 10 to 15 years ahead. A longer The problems which ave overlooked by the period would greatly increase the already consid­ criterion of need are the pvesence of socio­ erable uncertainty. The chief difficulty is popula­ economic factors in utilizing services and tion size, especially as respects the small areas recognition of the diverse elements that en­ for which most health services are provided. Birth ter into decisions. When government partici­ rates and migration patterns vary unexpectedly. pates, these cm be kzken into account. Since more accurate projections can be made for Choice of an explanatory model. — In addition large populations than, for small ones, where re- to a multitude of possible variations in use pat- sources are mobile it might be advisable to pro­ terns, there can be many variations in the way ject requirements and availabilities for the size services are provided, according to forms of of area that can be regarded as a single market. organization, productivity, scale of operation, Planning areas will differ in size for various re- et cetera. Also possible are detailed differences in sources, being smaller for immobile ones, such value judgments based, e.g., where equality is the as fixed facilities. On the average it is more eco­ goal, on equal access, equal use, or equal health nomical to combine resources in an adaptable status. fashion, having facilities operate at a constant—

23 though higher—cost over a considerable range of measure of health services. Dr. Sagen referred output . to the multinational study of health service utili­ It strikes me that for planning puYposes the zation involving Finland, Poland, Yugoslavia, the foremost need may be a ahta bank of tested United Kingdom, Argentina, three provinces in ideas in the jlexible use of vesouvces, given Canada, and two places in the United States, The the uncer.$zinties surrounding projections of study strengthens the view that we have no good population, in medical technology, and in a notion of need. At best we have only data on the populations desires fov health services. For degree to which needs are perceived. Thus in this reason alone a comprehensive appvoach Yugoslavia the rural agricultural population used to health services organization is @eferable the services less often, and yet when services to a categorical one in which services are were used they stayed for longer periods of time. Dr. Densen commented that this is true also in segregated. the United States. It has been suggested that some groups find it easier to stay in the hospital, Discussion since they do not have anybody to take care of them The assigned discussant, Dr. Anderson, agreed at home. in general with Dr. Klarman. The bane of the Dr. Densen also held that a functional approach health field is too much data. “We are victims of would prove helpful, in addition to morbidity and tremendous data-gathering machines and tend to mortality ~‘An activity framework is needed. ” be intellectually lazy and asphyxiated when it This was reinforced by Dr. Krohn: comes to design.” We have a variety of health delivery systems, The disclosure of unmet needs is a very dif­ in this country and abroad. They are all obviously ficult pvoblem, especially in cities with old functioning in some way or other, but we are barely people–down to ingrown toenails that may at the beginning in finding out how they actually lead to severe problems. Almost anything do work. We are still largely in the structural or may come to light when a population is ex­ static descriptive stage. We are far from achiev­ amined in some detail. ing measurements of efficiency. “We cannot even decide what are outputs and what are inputs. Use Dr. Berg also thought there was need for a is an output in some of our models, instead of diagnosis of function, just as of disease. “We also end results. ” need to understand how the public views dysfunc­ We are left studying such things as convenience, tions—even doctors often have very different waiting time, equal access, and so on. “We do not views.” know what proper use, or proper balance in uses, Further discussion developed the thought that, may be. “We can take various delivery systems while demand may be better than the need model, and show what they cost, how convenient or incon­ end results are also of some use. There is also venient they are, and “very, very roughly” some a fourth possibility y—identification of problems of the quality levels. and measuring degrees of result. It was also noted that the meeting had confined itself almost en­ The health service system is, then, an end in tirely to curative services, although they are only itself. It relieves pain, veduces anxiety, and one part of the model. In addition there are en­ occasionally saves life. I really think this is vironmental health services, nutrition, housing, a very sophisticated outlook. With backuzwd employment, et cetera. “We need a model of all populations, you can change things by health health services.” Mu. McNerney also mentioned services. The leading cause of death is an the varying demands of the individual, the em­ excellent measure of good health care. If it ployer, the neighborhood, the country, and so on, is heart disease, you ave getting good care. And Dr. Pirc pointed out that demands can change When the discussion was opened to the group, overnight. In Yugoslavia, demand tripled after there was some consideration of utilization as a passage of an insurance law.

24 Needs in Demographic Statistics and practices with respect to family formation. What we need are parallel period and cohort PRESENTATION BY DR. HAUSER fertility data, including nuptiality rates and fer­ tility by parity and age. Dr. Hauser confined himself to considering In a recent bookl published by the University future needs for demographic statistics only of Michigan, Dr. NGman Ryder has constructed insofar as the United States is concerned. a complete bridge between period and cohort Population totuls.-During the 1960-70 inter­ fertility. He found for the United States over re- censal period current population estimates and cent decades that about two-fifths of the variation projections for standard metropolitan statistical in period fertility was accounted for by the tempo areas have been developed. These data will make of fertility as distinct from the quantity of fer­ it easier to apply what we know about the country tilit y—that is by age at marriage and age of as a whole to these areas. We also need similar childbearing, rather than by changes in the number information for much smaller areas, including of children ever born. Thus tempo of fertility subdivisions of cities and counties, and especially is an important component of population projec­ community areas, which often do not conform to tions and should be regularly measured. political boundaries, Also needed is the kind of information that Population chamctsristics, —We need similar can be obtained from pregnancy histories. information for such population characteristics Mortality and morbidity. —For worthwhile as age, sex, color, and socioeconomic status reductions in mortality in the United States from (such things as income, education, occupation, now on, we are going to have to depend much more social mobility). The education of decedents, for on what Dr. Hauser called socioeconomic epi­ example, is a much better index of their socioeco­ demiology rather than on biomedical epidemi­ nomic level than their last year’s income. ology. Fertility measwres. —There will be a new The differentials in movtality by socioeco­ baby boom in the immediate future as our postwar nomic status within the United States are babies increasingly enter their rewoductive tremendous. Thus for 1960, 29 parcent of all years. female mortality in the United States would It would have begun earlier except that age be defined as excess, using the female pop­ at mam+age and age of having afirst child in- ulation having one or more years of college creased. I think this is because our pvesent education as a socioeconomic index. The ex­ young cohorts are learning that OUYsociety cess is about 9 percent for males. and economy are just not able to change rap- Some of the differentials by cause are quite idly enough-in this case expand-to accom­ startling, being of the order of 100 percent. modate to the changes in the reproductive In mortality as in fertility we need cohort pattern of the population. measures completely paralleling period meas­ ures.’ Yet the fact that the number of women between 20 and 30 years of age will increase about 35 percent It is going to be increasingly meaning& to within a seven- or eight-year period is certain to think in terms of cohort experience, and this bring a new tidal wave of babies as an echo of the too not merely in terms of the kinds of pwiod postwar baby boom. measurements we now have. This will be Hence there is an urgent need for cohort data true, fov example, with respect to new bio­ with respect to marriage, childbearing, child- medical developments, as with the antibiotics spacing, and attitudinal data to throw light on and estrogens. In fertility planning, cohort what actually is going on and the motivations and experience may be required to understand the incentives that are involved. This means that we impact of some modern. therapies over time. need the equivalent of the Growth of American lBehrman, S. J., Corsa, L., Jr., and Freedman, R. (editors): Family studies on an annual basis. We need to be Fertility and Family Planning:A World View. Ann Arbor, Uni­ kept up to date concerning knowledge, attitudes, versity of hiichigan Press. 1969.

25 Intevnd migration. —Needed will be current Linkages of already existing well-established estimates or components of all the recommended systems—census, social security, internal reve­ estimates of total population including small nue, NCHS—would greatly expand our statistical areas and even their subareas. stores. The quinquennial census would also be Marriage and divorce. —The United States is helpful. In addition, Dr. Hauser revived a pro­ far behind the rest of the developed world in posal for an annual sample census that he had marriage and divorce statistics. Improvement of made in 1941. It should lx of adequate size to the statistics in these areas would also help to permit estimates for regions and possibly the improve fertility statistics. We need information metropolitan areas “and so on. ” Already ‘the on the duration of marriages by the number of the Office of Economic Opportunity has furnished re- marriage, in view of our current “chronological sources that have enabled the census greatly to polygyny and polyandry.” enrich its current population survey sample. —The household statistics Family statistics. There could be a series of sample surveys now available in the United States are primitive which are rotated during the course of the and unprecise. The annual estimates “wiggle,” year, giving current information with the demonstrating that the data are unstable. sample thickened OY thinned as needed to The family is an analytical unit for fertility handle current needs. A rotating sample analysis, mortality analysis, and tibov force giving local area information could be pooled analysis. I think the family as a unit within to j.wnish annual statistics, much on the the next 10 or 15 years will be as important ordw of the National Health Survey sample. as the individual in statistical analysis. The

jizmily-cycle information pioneered by Glick Discussion is now a skmdard apparatus. Dr. Lee, the assigned discussant, indicated Here as everywhere in social analysis, longi­ that, striking evidence of the awkwardness of the tudinal analysis should accompany period analy ­ vital statist ics system can be seen in the fast sis. Mechanisms for achieving these goals.— TO that the study of socioeconomic differentials in get the statistics we need, among other things we mortality that Dr. Hauser has been working on must find ways of conducting the sorts of studies will not be published until 1970 (through no fault that Dr. Linder questioned—studies of small of his own) although it is based on 1960 data. A areas, family statistics, longitudinal studies, and quinquennial census, although not yet achieved, linking records by data banks. Dr. Hauser agreed was first proposed by U.S. Grant nearly a hun­ that Dr. Linder’s criticism of the techniques now dred years ago. “Both the vital statistics system available was well-founded. He also agreed with and the census system in this country, though Mr. Woolsey’s criticism of data banks as he had admirable in so many respects are antiquated. ” described them. It is a shame thatthese two activities are so I could not agyee move with Ted’s objec­ far away from each other. Since we cannot tions—and even emotional objections—to duta possibly foresee all the needs for dati which lnznks. But I think this Confewnce has illus­ will come over the next few decades—the trated that we keep using the same words with political changes, ctinges in welfare and in quite different images in our minds. In my population movements, for example—what we ctiatabank, I would not put everything onto the must tYy to work toward is a joint system of tape and then link everything with ewzrything. data collection. Perhaps the two activities need not be in the same agency. You would link those things for which you have a concept, a use, and a pwrpose. Even a Even today we do not really have a continuing multipurpose agency shoidd never get infor­ Census organization, although we do have conti­ mation for its own sake. It gets duta with ex­ nuity in the higher ranks. Every 10 years we hire plicit or implicit uses in mind. another bunch of amateurs to do the basic work.

26 We do not really need to collect everything the cause of death. In another international study I on a routine basis, much less tabulate or publish of the mortality of children under five years of everything. There are some basic variables which age, in certain countries where nutritional de­ I are absolutely essential for almost any kind of ficiency was identified as the underlying cause analysis. of death in about 10 percent of the deaths, it was named as an associated cause in from 40 to 70 I You could almost say that age, sex, and in percent of the deaths. our country race, are aluwys important, along with some good measuve of socioeconomic Dr. Puffer was certain that modernization of the mortality statistics would provide important status, prefeva My education. contributions to epidemiological studies of dis­ For these we need a large sample, though not eases, to knowledge of health conditions, and to necessarily 100 percent, taken at quite veg­ our understanding of the bearing of socioeconomic ulav intervals. Then we need to be able to factors on health. choose a smaller sample from our list of re­ Dr. Linder noted that he was “not too far apart spondents, to which we can put additional ques­ from Dr. Hauser on one point, ” once a matter tions skaped in terms of immediately present of definition is straightened out. His own skep­ needs. ticism as to the value of longitudinal studies We also need a vital statistics system which applied to the followup of specific individuals, and can be referred back to vevy quickly for not to the broader study of a group or “cohort” fuvther data. We do not need a wzstamount of of individuals over time. official data, but the ability to query the The need to pin ourselves down in communi­ family, say, in which the event occurred. To cation certainly applies in the data bank area. do this will require a considwable vestvuc ­ Dr. Hauser had said that he wanted a data bank twm”ngofthe vital statistics collection system, serving only specifically defined purposes, but which should be undertaken in collaboration Dr. Linder thought his example implied a vast or cooperation with, or simultaneously with multipurpose collection of data: the census changes I have described. I was agreeing with him wholeheartedly, and For a particular reason, for example, we might then his example unconvinced me. Into his on one occasion collect considerably more infor­ data bank he was going to put the census mation on every Aleut birth, and yet be content (200,000, 000 records); social security ckzta with, say, a 1-percent sample of other parts of (say 100,000,000 records); the intevnul rev­ the population. To get such a system and make it enue documentation (80, 000,000, vecovds, I work, both a considerable decentralization of our would guess); and then he would add the Health census and vital statistics programs would be Interview Survey. Out of all these recovds, needed, along with a considerable central coordi­ he said we could get, for example,some bet­ nation. ter estimates of small a~ea statistics and Dr. Puffer endorsed the importance of paying some information on internal migration. If more attention to multiple causes as a means of you ave aftev this, do not bothev with the I modernizing mortality statistics. She described Health Interview Survey— there is nothing a 12-city international research on mortality there with any bearing on this subject. Is ( which shows that additional information from there Yeally much that you could pull out in hospital and autopsy records when combined with all the othw recovds on these two matters? clinical data enables more precise definition of

27 Contrast this with his other example of a con­ Dr. Densen expressed the view that big area tinuous rotuting, expanding-contracting, jlex­ people had been talking about small area statistics ible sample to ~“ve information on metropol­ at this Conference. When various parts of the Pub­ itan areas. One (the data bank) is an enoY­ lic Health Service had conducted local area mous thing involving hundreds of millions of studies, they were not viable mechanism s.’ ‘Their records, from which it is doubtbl that you average life span has been pretty short.” could get much worthwhile. The other is a jlexible tool, an expanding tool that can be The kinds of thing they tvied to gather in the redesigned for one problem this year and for small areas were not sufficiently related to another pvo blem next year. This illustrates the problems of the areas. If we are inter­ the kind of direct, shaYp, and refined tool ested in demographic questions arising in thut statisticians should work for. small areas, we should associate them with pvogram questions. Dr. Hauser later replied that he had had sam­ ples of the various sorts of records he had named Dr. Densen also was interested in the re­ in mind, and not the entire files. lationship between the National Health Survey and Mr. Woolsey agreed with Dr. Linder, and gave small area information. He felt, for example, an illustration of the problems that would arise that reasonably good estimates of the proportion from merging bodies of information collected for of the population covered by health insurance in different purposes. a small area could be obtained by adjusting the National Health Survey data in terms of the age- When the question of a Federal duta bank sex composition of the small area. Are there any avose, we ware asked whethw it umuld not other questions that could be answered in this be wondeyfil to link the information on dis­ manner? ability obtained from the health interview In advance of Dr. Hauser’s reply, Dr. Klar­ with what social security gets. The pvoblem man advised, “Don’t do it. I tried it once.” Dr. is that the definitions are not the same, and Hauser agreed: for a very good reason. In the case of SOcial When you use the chxwactevistics of an”area, security the definition was established bylaw, even a very small area, and attribute them and is extremely complicated. I would defy to the persons living in that area, you are anyone to take that definition and try to cavry subject to the eYYor of ecological cozvela ­ it out in an intevview suvvey. It could not be tion. done. Mr. Woolsey went on to say that while he was The work of Victor Fuchs, who claimed that opposed to open-ended record-linkage arrange­ higher death rates were associated with higher ments, where masses of records are put into a incomes, had been mentioned as contradicting the system for all kinds of potential uses, he felt very Hauser–Kitagawa finding of an inverse relation- differently about closed-end record-linkage ar­ ship. Dr. Hauser stated that Fuchs’ study illus­ rangements, where information from different trates the error of ecological correlation. His sets of records is combined because specific ob­ analytic units are entire States, of which many are jectives have been set up. An example would be extremely heterogeneous. The Hauser-Kitagawa linking infant birth records with infant death rec­ differential mortality study will include direct ! ords. ‘‘That’s another matter entirely, and can measurements of the ecological correlation error produce valuable data.” obtained by comparing attributes of the individual Mr. Woolsey agreed with Dr. Lee that the vital as reported in the Census and on his death cer­ registration system would have to be extensively tificate with the same attributes as they charac­ revamped to use it regularly in followback studies. terize the Census tract in which he resided. “It’s a very clumsy tool because it takes so long Dr. Sagen noted that vital statistics is full to get the results out. And of course our samples of small area statistics, “but we’ve got the wrong have been very small.” kind”:

28 Take Alpine County, California. I think it had In a society in which fertility is almost 100 523 inhabitants in 1964. There were 2 mar­ p.wcent controlled, as is true of American riages there in that year; 4 births to resi­ society, it may tuvn out to be a pretty good dents of the county, of which 2 occuwed in indicator, just as it has been in American the county; and 6 deaths to vesidents of the a.gricultuve. !rIntention to plant” was the county, of which 2 occwred in the county. source of Whelp tents family-size-preference But we do not know anything about the Wood­ concept. kzwnDistrict in Chicago, which may kzzve say As a general observation connected with a 200,000 people. number of matters touched on in the discussion, Dr. Hauser felt that more unified statistical co­ Dr. Hauser agreed that our geographic clas ­ operation, at the Federal level and between Fed­ sifi cation system is a fundamental problem, “and eral, State, and local levels, might well be the we haven’t done anything about it.” About 1940 quantum jump in statistics that would charac­ we were being promised a grid system, and now terize the 1970’s. But at the present time the we have the zip code, but that is guided by postal country is caught in a system of State and local convenience. governments that is no longer meaningful. With respect to a question concerning occu­ We are not going to get very far with small pation as an analytic tool, it can be made to work area statistics or any kind of statistics on an very well indeed, Dr. Hauser stated, if income area basis until we come to some better and education are included as factors. On a more method of classifying areas and a method general basis, it is rather poor. “Proprietor,” for whereby individuals can identify the area to example, may include the fellow who owns a large which they belong. I do not know what my sales enterprise and the chap who sells peanuts census tract is. on the street corner. With respect to education as a socioeconomic To a question as to the value of family-size- indicator, measurements are needed as to quality preference data, Dr. Hauser felt that these figures as well as quantity. In the 1970 Census we are had not been adequately tested as to reliability or going to find that nonwhite persons have just about precision. They are nonsensical when used in de­ caught up with white in years of schooling com­ veloping regions, where everybody knows that God pleted. Actually what this means is that in many determines the number of babies you will have. of our local school systems, largely because of When you come to Western societies, however, financial considerations, virtually no one ever the technique becomes more meaningful. fails.

29 HEALTH DATA NEEDS AND USES IN FORMULATING PUBLIC POLICY

PRESENTATION BY DR. RIVLIN was on the younger age groups, and that the im­ provement had slowed down by the early 1950’s. This treated in a paper by Dr. topic was Further, the gains are very unevenly distributed Rivlin at a dinner meeting of the Conference. among Americans, and at least 15 nations have a As Assistant Secretary for Planning and Eval­ longer life expectancy at birth than we do. Among uation in the Department of Health, Education, and factors contributing to the country’s failure to Welfare, Dr. Rivlin had supervised preparation of improve its health further, mention was made of “Toward a Social Report” (January 1969), which had been developed to fulfill a charge to Secre­ styles of life (smoking, overeating, etc.) . . . tary Gardner in President Johnson’s Health and socioeconomic deprivation . . . the uneven dis ­ Education Message of March 1, 1966: tvibutionof medical cave, the relative under- Through the programs entrusted to its cave, use of preventive, as opposed to curative and the Department of Health, Education, and ameliorative care. Welfare exercises continuing concern for In her dinner presentation, Dr. Rivlin told the the social well-being of all ouv people. Al­ Conference that this health chapter had been the ready, as I knve indicated in this message, easiest to write. The study group that worked on it has become possible to set ambitious the report had been able to find no data of com­ guals for the futwe. parable scope or quality for the other chapters. To impvove our ability to chart our prog­ In the health area, statistics were available both ress, I have asked the Secretavy to establish as included on vital records generated principally within his O~ce the resources to develop for other purposes and as especially collected to the necessavy social statistics and indicators yield health information. Of a third kind of sta­ to supplement thse pvepaved by the Bureau tistics, experimental results—by which Dr. Rivlin of Labor Statistics and the Council of Eco­ meant the result of actual trials of hypotheses in nomic Advisevs. With these yardsticks, we real-life environments—”we don’t have much in can bettev measure the distance we have any area. ” Dr. Rivlin noted that even the health come and plan for the way ahead. chapter was largely given over to negatives of health-to death, sickness, disability, and the In “Toward a Social Report,” asocial indica­ like-rather than to positive aspects of health, tor is defined as where factual information still is largely lacking. a stutistic of direct normative interest which Preparing the social report revealed that we facilitates concise, comprehensive, and bal­ have much more material for assessing questions and problems, and for identifying relations and anced judgments about the condition of ma­ trends than exists for defining needs. We probably jor aspects of a society. It is in all cases a direct measure of welfare . . . . Thus statis­ have suitable methodologies but few data. When 1 tics on the number of doctors OY policemen it comes to deciding on what action courses to could not be social indicators, whereas fig­ follow, “the problems are horrendous . . . . We wres on health or crime rates could be. don’t even have the mechanisms here.” The vari­ ables are multiplied; we cannot be sure about Chapter I of the Report, on health and illness, was where we should start; there are many competing addressed to the question “Are we becoming needs and complicating factors; political consid­ healthier?” It was noted that the dramatic in- erations and vested interests may come to the creases in our health and life expectancy that have center of the stage; methods of assessing results characterized the 20th century have largely re­ are obscure. Then when a great deal of money was sulted from developments whose immediate effect put into education, a few years later it was diffi-

30 cult to say what had been obtained from the invest­ Dr. Rivlin asked, “Is there any good way to ment. In the social sphere, results may take shape judge a social experiment except by trying it out only during the course of entire life histories, and in real life?” In any event, the difficulties and may be expressed in terms of widely prolifer­ actualities seem to argue for less aggregated sting relationships for which measures are often data, and more specific information focused on uncertain or nonexistent. Further, there may not definite problem situations where real social ex­ be very much difference, in the real world, between periments come under consideration. a social program and the alternatives that are pro- posed.

INTERNATIONAL COLLABORATION OF NATIONAL COMMITTEES

PRESENTATION By DR. SKRINJAR tics, including diagnostic and measurement prob­ lems, sampling methods, and various analytic The initial presentation was by Dr. Skrinjar. techniques; cancer statistics, including registries; She had decided to cover the entire theme of inter- and health service statistics, including resources, national cooperation in health statistics, rather activities, utilization, special services, and meas­ than merely in relation to National Committees on urement of the efficiency and effectiveness of Vital and Health Statistics. services. Attention has been paid to other sub­ jects, such as health statistics in developing Diversity of National Efforts in This Field areas, health indicators for measuring levels of living, problems of teaching and training, and of National vital and health statistics vary course the activities of National Committees on greatly in reliability, relevance, comparability, Vital and Health Statistics. availability, and degree of use by health planners With the advent of modern methods of data and decision makers. Very often the producers of handling, the old questions of how to improve the the statistics, the statisticians who develop them, collection of information, the quality of the infor­ and their consumers are not working together mation gathered, and the utilization of the statis­ sufficiently. Hence there is need at the interna­ tics have taken new forms. Without doubt a variety tional level to demonstrate the usefulness of co­ of answers are dictated by varying situations and operation. One way of doing this is by showing how resources. Record linkage and statistics obtained useful cooperation between nations can be. This through ad hoc surveys are coming into more collaboration has taken different forms: exchange frequent use. Because of these and other changes of information, including such things as data, more detailed training is needed by statisticians. practices, definitions, methodology; exchange of This subject too has been considered by a number ideas on methodological and organizational ques­ of Expert Committees. I tions, leading to international studies of various The rapid social and technical changes of questions; and dissemination of the results, with recent years have increased the need for coordi­ assistance to countries to put them into practice. nation and collaboration in developing health sta­ Cause-of-death statistics have been the main tistics. Thus the WHO Regional Office for Africa area for activating international cooperation. is including a paper on “Collaboration in Health Nevertheless, Expert Committees on Health Sta­ Statistics in Developing Countries” in its June tistics, regional conferences, and other meetings Regional Seminar. have made recommendations on many topics, of Essential to international cooperation in which Dr, Skrinjar mentioned especially hospital health statistics is cooperation at the national statistics, for both administrative use and mor­ level. In many countries various departments and bidity analysis; various types of morbidity statis­ agencies have developed overlapping health statis -

31 tics. These need to be integrated to simplify the It is believed that a National Committee be- administrative system and make it easier for comes possible in countries with developing sta­ users to satisfy their needs, as well as in pre- tistical services only where a permanent advisor paring general national plans. is assigned to a well-supported project. Even then, a health statistics committee camot do much National Committees and Their Equivalents without strengthening the statistical unit, since otherwise there would hardly be anyway to imple­ Not all of the 50 National Committees on Vital ment the recommendations it might make. and Health Statistics, or their equivalents, which International collaboration of National Com­ have been created are currently active. Funds and mittees could take a number of forms: personnel may have been lacking or there may 1. National Committees could be one of the have been no means of implementing Committee ways in which countries cooperate in in­ recommendations, or the statistical organization ternational studies. responsible for vital and health statistics may have failed to show interest. 2. Neighboring countries could collaborate The organizational patterns of National Com­ on problems of common interest. mittees are varied: 3. Permanent or ad hoc cooperation in par­ 1. A Committee may function as a subcom­ ticular fields might be arranged. mittee of the National Council of Health, 4. National Committees could provide guid­ or of the National Council of Statistics. ance and advice to similar agencies in 2. A Committee may be organized as an in­ other countries. terdependent or even independent inter- 5. Information and other materials could be agency body, working through standing exchanged. subcommittees or ad hoc appointed groups. “To be of practical service, WHO must be guided, supported, and authorized by the countries 3. The Committee may be set up within the concerned.” Ministry of Health to coordinate the work of various departments concerned with Discussion health statistics. In the ensuing discussion Dr. Krohn remarked 4. Two or more standing committees maybe responsible for specific health statistics that the European Region, where he serves, dis­ fields. plays problems in health and in health statistics very similar to those of the United States. “On Some countries with a highly centralized sta­ my way to this Conference I thought about our tistical system have thought that a special co­ problems, and not one of the points that occurred ordinating and advisory body was not needed. to me has not been mentioned here.” The popu­ lations in his region show low levels of increase, In view of the evaluation stwdy of National with drifts toward the higher ages. “In such a Committees that WHO is planning to make, population many of our health problems are not and in connection with this anniversary Con­ detectable by traditional statistical systems.” ference, WHO has contacted members of the The death statistics for the older ages, with large WHO Advisory Panel on Health Statistics, numbers of deaths in relatively few categories, are and also has received comments from four not very sensitive. Nor are the health problems Regional Offices, to get views on how coor­ very satisfactorily reflected in hospitalization dination of vitul and health statistics can best data. be achieved and the collaboration of national exparts be improved. Replies from 40 offices But not all health statisticians aye worried wwe veceived. about this. Some have not felt that this is

32 their responsibility. In some countries their ports sent to government agencies sometimes end primary task is to gather data in a~eement up on the shelves without having been read by with the present rules, and the find goal in those interested in and responsible for the subject their efforts is an annual repovt along tra­ in question. ditional lines that gets published 2 or 3 years Mr. Reed observed that the United Kingdom after the events. had had a National Committee which had done a Health administrators, however, are greatly tremendous amount of work, especially on the concerned. “They need intelligence units which Eighth Revision; that it was presently without any can rapidly provide current information of im­ National Committee at all; and that it would shortly portance for administering health services.” What have two such Committees ”workingin parallel-on seems to be needed are ad hoc surveys, possibly medical and on demographic statistics. The hope obtained by means of a rotating sample such as is that these will do a great deal of their work Dr. Hauser described. through ad hoc committees dealing with particular But there is perhaps the more important and problems. more difficult fact that we lack indices for mess­ Mr. Reed felt that WHO was especially val­ uring the kinds of morbidity wc are now faced uable, in relation to national activities in health with. statistics, because it acts as a catalyst. “It’s easy at international gatherings to decide that Consider for example our epidemic of traf­ something needs doing, but if someone from WHO fic-accident injuries, pavticulavly among does not take the initiative it may not get done.” young males. Why are they such a high-visk But there is also need for collaboration between group? When they are examined, we find that individual countries, as had occurred between the they are at the peak of theiv physical devel­ United States and the United Kingdom on multiple opment. They are in as good physical condit­ causes of death. ion as they will evev be. Thare must be Dr. Pirc noted that WHO’s Expert Committees something else. up to 1960 often mentioned National Committes, Again, especially in Scandinavia, we ave fac­ but since then almost not at all. In his judgment, ing an epidemic of psychotropic dmgmisuse. he felt that this meeting should express the view What is the population at risk? We cannot wse that the work of National Committees should be the typical risk factor of poov socioeconomic more strongly emphasized. Dr. Dunn, chairman of condition because this kind of morbidity is the discussion, suggested that perhaps a letter found lavgely in well-to-do classes. from the Secretary of the U.S. National Committee Dr. Krohn concluded by advocating more flex­ noting this suggestion might be helpful. ibility in health statistics services and measures. Dr. de Groot was of the opinion that Segi’s “We can’t just do more of the same. We must work on cancer in various countzies shows that choose and innovate.” international comparability has its merits. In view of special needs in the Netherlands, We need something like what you have in the I Dr. de Groot recommended development of special United Stutes. Here in the National Center coding and classification systems for various you have a unit which simply sits and ana­ medical specialties, and for the measurement of lyzes situations to find out what they really morbidity in general practice. In the latter area mean. I think this is of tremendous impor­ there has been some collaboration between Dutch tance, and is something we lack in European and English organizations. Secondly, there is need countries. to push for international comparability of cate­ General comparisons between countries based on gories for occupational and social groups. Method­ routinely gathered statistics have been over- ological cooperation would be desirable in estab­ played. What is needed is an interchange of meth­ lishing international standards, more apt than the odologies. The National Center might well enlarge conventional ones, for the appraisal of health and its distribution of methodological reports by so­ social well-being. Cooperation with other coun­ liciting the names of appropriate individuals. Re- tries would be helpful in relation to studies of the

33 geographic distribution of certain conditions, in­ 15 to 20 years. PeYhaps it would be u$efil cluding congenital malformations of the central for each of the national committees to reex­ nervous system, in relation to stillbirth and infant amine now its program and functions. In this mortality rates. Work in the Netherlands would connection, Dr. Skrinjar mentioned coordina­ be helped by comparisons with Germany, Swit­ tion as an importuntfinction of National Com­ zerland, Belgium, and France. mittees. While it is true ttit coordination is Dr. Guidevaux reported that France’s Na­ needed in many countra”es, the assumption of tional Committee consists of representatives of this function by National Committees may most of the government agencies that are inter­ make it difficult to carry out the move im­ ested in health, and persons from various techni­ portant technical development activities that cal agencies providing or using health statistics. National Committees can wsefully @WSU6?. The French Committee has no executive authority, and limits itself to such areas as mortality, mor­ Lastly, it may be desirable to hold another bidity, and hospital statistics. She would welcome International Conference of National Com­ international comparisons through the good offices mittees to estublish new goals for National of the World Health Organization, and likewise Committees. through publications describing work being car­ Dr. Densen called attention to the fact that ried out in various countries. Dr. Skrinjar herself and a number of discussants Dr. Puffer reported that National Committees touched on a common theme-the need to develop have had a varying success in individual Latin health statistics in relation to service programs. American countries. In addition regional advisory This could be one of the ways of vitalizing Na­ committees have sometimes proved useful. Dr. tional Committees. It certainly could be one of the Puffer then asked ways in which WHO could take some leadership. Why is it that the present National Committ­ Dr. Linder urged that a national conference ee has had so much success? I think one of of the present kind be arranged more often than the reasons is that it has calledfov helpfiom every. 5 years, with international participation. many specialties. Anothavreason is its choice Dr. Dunn referred to the World Health Organ­ of topics fov study. And I think a third veason ization’s definition of health as a state of complete is the continuity ofsawice and conkribwtions physical, mental, and social well-being. of its Executive Secvetary. This is the most widely quoted definition in Dr. Dunn then called on Dr. Moriyama, who the health avea that we have evw had; but no spoke as follows: one really understands it. It is up to the sta­ tistical people to make what it means more I agree with Dr. Pirc that WHO has notplayed real in terms of health entities consonant an active role with regurd to National Com­ mittees. I would like to see WHO exercise with the definition. leadership in promoting National Commit- Dr. Skrinjar reminded the group that WHO tee activities. would be glad to help; but “WHO is there to give The National Committees, many of them now whatever assistance it is asked for. It cannot inactive, have been in existence for the past do anything without support at the national level.”

34 CONCLUSION - BROAD CONFERENCE THEMES

Dr. Berg commented on the general tenor and bining of data, but techniques to be judged by content of the Conference. He found’ ‘a remarkable the quality and appyof.w-iateness of the ma­ degree of agreement on a number of methodolog­ teriul to be obtained. PeYhaps too following ical and philosophical topics; but what is remark- this path will do much to bypass the threat of able, the views we agree on are not in fact shared confidentiality breaches. by most vital statisticians or registrars or even The third broad area of agreement is related epidemiologists.” He identified four organizing to what Dr. Dyar called ‘‘uncertain~”: principles that guided the Conference. The first of these is “a remarkable degree I would locate hwe all the emphasis on the of flexibility and imagination” need for methodological Yeseavch and devel­ opment so that we are not so uncertain as to With an emphasis on conceptualization and what we are doing, and that we are less un­ free-wheeling thinking about new ways of at­ certain as to what sharing of pevsonal infor­ tackhgdata and their meaning. This can only mation the public will tolerate. happen, however, when one maintains contin­ uing attention to definitions . . . . It uxzs pw­ In the fourth place, Dr. Berg stated “we fectly clear that we are going to have to de- identified the broad issue of trusteeship”: fine ouv terms careji.dly if we want to think Who is going to be Responsible foy upholding freely. Even in the area of confidentiality and the public~s m“ghts, whethm they find expres­ the right to priwzcy, it is clear we need to sion on the one hand in the need to avoid in­ see move sharply what we are thinkin~of . . . . msion of pvivacy ov violations of confiden­ It was interesting that we even disagreed on tiality, ov on the other hand, in making ceY­ terms like longitudinal, followback, and so tiin that the statistical dQta serve well not on—classical terms of our profession. So only society in general but people? too with comparability-it becomes possible only when we can agree on tevms and meth­ As a personal expression, he being an epide­ ods. miologist and not a vital statistician, Dr. Berg concluded: The second broad area of agreement is “the I want to @“ve an encmmows vote of confidence emphasis on relevance or discrimination”: in the vital statistics interest. The vital sta­ tistics people want the information they are Rather than just going out and gatheving gathevi~ to be not mevely stored in books but masses of data and increasing our empives used; and therefore they want this information by the storage of tapes, everyone agreed that to fit our growing needs, we must make definite decision as to what we I do . . . . This willingness to insist on relewmce Mr. Woolsey thanked the National Commit- and decision- mukin.g as an absolute basis for tee’s international visitors for their attendance and participation. Mr. Reed responded on their even the gathering of data, and the methods of developing data, shows a remarka bleflex­ behalf. Dr. Berg noted that a generous contribution ibility and freshness. We ware even willing from the Milbank Memorial Fund had helped to pay to consider abandoning the classic vital sta­ part of the expenses of the meeting; and concluded tistics system as a means of obtaining basic it by expressing the thanks of the conferees to the data, staff-Mrs. Petersen, Mrs. Lane, and Mr. Krue­ ger—who had contributed so much to the smooth­ The advantages of the emphasis on velevance ness with which the Conference was planned and are not only economy but quality. Even with executed. At an earlier meeting, Dr. Moriyama vespect to data banks and vecord linkage, it had been presented with a plaque commemorating is evident thut we agreed that this was not his 20 years of service with the National Com­ just an undiscriminating massing and com - mittee.

000 35 APPENDIX

PAST AND PRESENT COMMITTEE MEMBERS

Anderson, Odin W., Ph. D., 1959-63 Davis, Kingsley, Ph. D., 1969- (Absent) Professor and Associate Director Director and Professor of Sociology Center for Health Administration Studies International Population and Urban Research University of Chicago University of California Chicago, Illinois 60637 Berkeley, California 94720

Baehr, George, M.D., 1949-55 Densen, Paul M., SC.D., 1949-59 110 East 80th Street Director, Center for Community Health New York, New York 10021 and Medical Care School of Public Health and Medical School Beelman, Floyd C., M.D., 1949-51 (Absent) Harvard University 1319 Huntoon Street Boston, Massachusetts 02115 Topeka, Kansas 66604 *Dorn, Harold F., Ph. D., 1949-63 Berg, Robert L., M. D., 1965- Professor and Chairman Dunn, Halbert L., M.D., 1949-60 Department of Preventive Medicine and 9130 Riverside Drive Community Health Fort Foote, Maryland 20022 The Medical Center The University of Rochester Rochester, New York 14620 Dyar, Robert, M. D., 1961-67 Dean , Graduate School of Medical Sciences Chancellor, Loren E., 1962-66 University of the Pacific Chief, Registration Methods Branch San Francisco, California 94115 Division of Vital Statistics National Center for Health Statistics, HSMHA *Fales, W. Thurber, SC.D., 1949-53 Public Health Service, DHEW Rockville, Maryland 20852 Gaffey, William R., Ph.D. 1969- Senior Biostatistical Consultant Crosby, Edwin L., M.D., 1952-58 Institute of Medical Sciences Dii4ector Pacific Medical Center American Hospital Association San Francisco, California 94115 Chicago, Illinois 60611 Haenszel, William M., 1964-68 (Absent) Daily, Edwin F., M.D., 1949-60 (Absent) Chief, Biometry Branch Director, Maternal and Infant Care Projects National Cancer Institute, NIH The City of New York Department of Health Bethesda, Maryland 20014 New York, New York 10013 Hamilton, C. Horace, Ph. D., 1960-64 Davids, Donald J., 1966- Associate Director Chief, Records and Statistics Section Carolina Population Center Colorado State Department of Public Health The University of North Carolina Denver, Colorado 80220 Chapel Hill, North Carolina 27514

36 I

Hamilton, Eugene L., 1949-59 (Absent) Lewis, Charles E., M.D., 1968- (Absent) Director, Medical Statistics Agency Assistant Director and Professor of Office of the Surgeon General Social Medicine U.S. Department of the Army Center for Community Health Washington, D.C. 20315 and Medical Care School of Public Health and Medical School Hauser, Philip M., Ph. D., 1949-60 Harvard University Director and Professor of Sociology Boston, Massachusetts 02115 Population Research and Training Center University of Chicago Lilienfeld, Abraham M., M.D., 1969- (Absent) Chicago, Illinois 60637 Professor and Chairman Department of Chronic Diseases Heustis, Albert E., M.D., 1958-61 (Absent) School of Hygiene and Public Health Director, Michigan Association for The Johns Hopkins University Regional Medical Programs Baltimore, Maryland 21205 East Lansing, Michigan 48823 Linder, Forrest E., Ph. D., 1968- Hubbard, John P., M.D., 1956-61 (Absent) i958-67 (Ex officio) President and Director Professor, Department of Biostatistics National Board of Medical Examiners School of Public Health Philadelphia, Pennsylvania 19104 University of North Carolina Chapel Hill, North Carolina 27514 Hutcheson, Robert H., M.D., 1951-58 (Absent) Commissioner MacMahon, Brian, M.D., 1959-63 Tennessee Department of Public Health Professor, Department of Epidemiology Nashville, Tennessee 37219 School of Public Health Harvard University Kirk, Dudley, Ph. D., 1961-65 (Absent) Boston, Massachusetts 02115 Professor of Demography Food Research Institute McNerney, Walter J., 1963-67 Stanford University President Stanford, California 94305 Blue Cross Association Chicago, Illinois 60611 Kiser, Clyde V., Ph. D., 1965-69 Vice-President for Technical Affairs Moriyama, Iwao M., Ph. D., (Ex officio) 1949- Milbank Memorial Fund Director, Office of Health Statistics Analysis New York, New York 10005 National Center for Health Statistics, HSMHA Public Health Service, DHEW Klarman, Herbert E., Ph.D., 1967- Rockville, Maryland 20852 1 Professor Department of Environmental Medicine Parke, Robert, Jr. 1968- and Community Health Program Planning Officer Downstate Medical Center Bureau of the Census State University of New York U.S. Department of Commerce Brooklyn, New York 11203 Washington, D.C. 20233 Kotin, Paul, M.D., 1969- (Absent) Philp, John R., M.D., 1966- (Absent) Director, National Institute of Environmental Health Officer Sciences County of Orange Health Department National Institutes of Health Santa Ana, California 92702 Research Triangle Park, North Carolina 27709 *Reed, Lowell J., Ph. D., 1949-56 Lee, Everett S., Ph.D., 1964-68 Professor, Department of Sociology University of Massachusetts Amherst, Massachusetts 01003

37 Sagen, Oswald K., Ph. D., 1954-58 Thompson, Donovan J., Ph. D., 1967- Assistant Director for Health Statistics Development Professor, Department of Preventive Medicine National Center for Health Statistics, HSMHA School of Medicine Public Health Service, DHEW University of Washington Rockville, Maryland 20852 Seattle, Washington 98105

Schlesinger, Edward R., M.D., 1960-64 *Whelpton, P. K., 1949-61 Professor of Maternal and Child Health Graduate School of Public Health Woolsey, Theodore D. (Ex officio) 1967- University of Pittsburgh Director Pittsburgh, Pennsylvania 15213 National Center for Health Statistics, HSMHA Public Health Service, DHEW Shackelford, Mrs. Margaret F., 1958-62 Rockville, Maryland 20852 4638 Willard Drive Oklahoma City, Oklahoma 73105 Yerushalmy, Jacob, Ph. D., 1963-67 (Absent) Professor of Biostatistics Sibley, Elbridge, Ph. D., 1949-50 School of Public Health Executive Associate University of California Social Science Research Council Berkeley, California 94720 New York, New York 10017 Yoder, Franklin D., M.D., 1962-66 Taeuber, Conrad, Ph. D., 1961-65 Director of Public Health Associate Director State of Illinois Department of Public Health Bureau of the Census Springfield, Illinois 62706 U.S. Department of Commerce Washington, D.C. 20233

*Deceased

38 OBSERVERS AND GUESTS OF THE COMMITTEE

Confrey, Dr. Eugene A. Puffer, Dr. Ruth R. Associate Director, Program Planning & Evaluation Chief, Health Statistics Department Bureau of Health Professions, Education, and Regional Office for the Americas Manpower Training World Health Organization I National Institutes of Health, DHEW Washington, D.D. 20037 Bethesda, Maryland 20014 Reed, Michael de Groot, Dr. Meindert J. W. Registrar General Head, Division of Health Statistics General Register Office Central Bureau of Statistics Somerset House The Hague, The Netherlands London, England

English, Dr. Joseph T. Rivlin, Dr. Alice M. Administrator Senior Fellow Health Services and Mental Health Administration The Brookings Institution Public Health Service, DHEW Washington, D.C. 20036 Rockville, Maryland 20852 Simmons, Walt R. Guidevaux, Dr. Madeleine Assistant Director for Research and Director, Section for Information on Scientific Development Public Health National Center for Health Statistics, HSMHA National Institute for Health and Public Health Service, DHEW Medical Research Rockville, Maryland 20852 Paris, France Skrinjar, Dr. B. Harris, Fraser Medical Officer Director, Health and Welfare Division Development of Health Statistical Services Dominion Bureau of Statistics World Health Organization Ottawa, Ontario, Canada Geneva, Switzerland Krohn, Dr. E. F. Regional Officer for Epidemiology and Speiser, Lawrence Health Statistics Director, Washington Office American Civil Likxmties Union Regional Office for Europe Washington, D.C. 20036 World Health Organization Copenhagen, Denmark Storck, Dr. John Pirc, Professor Bojan Consultant Chairman, National Committee for Vital and National Center for Health Statistics, HSMHA Health Statistics of Yugoslavia Public Health Service, DHEW Zagreb, Yugoslavia Rockville, Maryland 20852

000

39 INDEX

The letters following page numbers indicate page quadrants (a, upper left; b, lower lef~ c, upper righ~ d, lower right)

Annoyance as basis for opposing information gathering, Cooperation, international, in vital” and health statistics, 6C 31C f Balance: Need for in developing countries, 31d Need for, with fundamental rights, 9c, lOa, 10d Dependence on national cooperation, 31d Assumes a harmony of interests, 1la Forms of, 32c Census: Correction of files, proposed right to allow, 6d Confidentiality provisions of, 12c-13c Current Population Survey, 12c Present system antiquated, 26d Death index, national, 5b Need for joint system of data collection with vital Demographic statistics, needs (by socioeconomic statistics, 26d f status): Cohort statistics needed in relation to vital data, 19c Population totals and characteristics, 25a Committees, local peer review, to protect research Fertility measures, including period and cohort dat 1 subjects, 9C f 25a f !’ Comprehensive health care services, use of when es­ Mortality data analogous to the fertili~ measures, 25c tablished, 3a Internal migration, 26a Compulsion (legal) to answer statistical questionnaires: Marriage and divorce, 26a Possible benefits of, 10b f, lld Family statistics, 26a Experience with noncompulsory systems, lld, 12b, Mechanisms for meeting these needs, 26c 12C ff Ecological correlation, error of, 26d United Kingdom experience, 1ld; French, Yugoslavian, Environmental statistics, need to study, 17a Scandinavian, 12a Family statistics, 16b, 19c, 20a Census procedures, 12c ff Adequacy of family-size preference data, 29c Conceptualizing statistical problems: Followback studies, 4b Need for, 18b f Difficulties of, with vital registration system, 28) Must be based on unique features of the problem “Fringes” of frequency distributions, need to study, 161i area, 20d Health, indices of: Conference themes, four, 35a ff Need for developing, 20c, 30d Confidentiality: Factors working against health, 30c More limited right than that of privacy, 8C Need to give more meaning to WHO definition of health, In common law, 10a 34d Gives full protection where statistics are concerned, Health needs of Nation, impact of general social con.. 10d; this position questioned, lla ditions on, 2b ff Legal status in United Kingdom, lld Health services dat~ The fact and the image of confidentiality, both im­ Tendency to desire too much data, 21d, 24a portant, 13b Internal management needs, 21d Maintainable by local jurisdictions, 14w this ques­ Research needs, 22a f tioned, 14a Planning needs 22c ff Difficulties in protecting the data, 14b H Demand is a better criterion than need, 22d fl Need for clear Federal policy position on, 14d Government can evince demand, 23b Releasing professional lists, 14d Choice of explanatory model, 23b f Lack of information on confidentiality practices, 15a Influence of supply on demand, 23d, 24d Consenti Dealing with the future, 23d Must be freely given, informed, and not violated, 8d Health services system: Meaning of term, 10c; illustrated by Miranda case, 10c Type of health system needed is itself a good measure Concept is complicated, 13c of health care, 24b Cooperation of disciplines needed to solve current Utilization as a measure, 24a; unmet needs, 24c; problems, 5d end results, 24d

40 Need for including many nonhealth variables, 24d National data center proposal: Hospital medical records: Reason for public concern about 9b No longer confidential, 7b Adverae characterizations of “data bank” concept, 10a, Getting permission to use for research, 7d 16c, 19c, 20a, 27d Information in records: Suggested control agencies: Congress; the press; Now available to whom?, 7a professional associations; general control Status of hospital medical records, 7b commission, 12a; Bureau of the Census, 17c; Informed consenti See consent Executive Office of the President, 18a; an Longitudinal studies, 16b, 19c, 20a independent agency like the Federal Reserve Distinction between followup of specific individuals, system, 18a and of cohorts, 27c Information agency and its basic sources should not Mass society: be separated, 15a Information needs of, 6a Need to link data according to concept and purpose, Security a right of the collectivity, 10d 26~ question of linkages involving present Microstatistics, need for, 19b diverse systems, 26c Multiple-cause-of-death analysis, 16d, 27b Quinquennial and annual (sample) censuses, 26c National Center for Health Statistics: Problems from merging data collected for different Enlarged functions of, 2a H purposes, 28a Should make more use of data collected by other More unified statistical cooperation, in any event, organizations, 14a desirable, 29c Typical adverse reactions to data gathering from Nutrition surveillance system proposed, 3a public, 15a Privacy: Appropriate location of Federal statistical activity, Demand for is “a cultural atavism”, 6a 17c H, 20b, 21a Invasions of by rhe private sector and by government Health statistics in Yugoslavia deteriorated when surveillance agencies, 6b placed in central statistical agency, 21b Need of investigators to meet problem as public Using National Health Survey data to estimate small- actually perceives it, 6b f area values, 28c Subjectivity of criteria of, 7a National Committees and their equivalents: Of patient records in malpractice suits, 7b Patterns of, 32a Five interferences with, 7C Interest of WHO in views on better coordination, 32b “Right to be let alone”, 8b Need for permanent leadership of, with support, 32c Right to, currently still being developed, 8b f Health problems in Europe similar to those in U.S., Reserved topics, 12a 32d ff Census procedures, 12c ff Need in Europe of something like the U.S. Committee, Safeguards should be accommodated to the public 33C interest, 14a Need for interchange of methodologies, 33b Need to probe the concept, 15d Situation in United Kingdom, 33c Protection techniques against information intruders: Need for more emphasis on National Committees by Criminal penalties, 9a WHO Expert Committees, 33d, 34b Damage suits, 9a Dutch suggestions, 33d Administrative controls, as by a protecting trustee- Situation in France, 34a ship, 9a, llb Regional advisory committees in Latin America, 34b Triple-file system, llb Suggestion that NCS reexamine their program and Public: functions, 34c Needs to understand changing values and techniques, Suggestion that an international conference of NCS be 5d f held, 34c Census efforts to probe reactions to proposals, 12d Vitalizing NCS by relating health statistic to service Steps taken by Census to acquaint public with its programs, 34c policies, 13a National Committee, U.S.: Subtle policy differentiations will not be understood, Examples of its past achievements, 3C 14C Need to study relations with Public Health Conference Public Health Conference on Records and Statistics: on Records and Statistics, 15b Need to study relations with National Committee, 15b Need for study committees on: health indices, 20c; Public Health Service local peer review committees plight of the vital statistics system, 21b f to protect research subjects, 9C f Reasons for success of the Committee, 34b Record-linkage studies, 4b f Proposal of conference like the present one more Reasons for, and examples, 4d f often often than every 5 years, 34d Difficulties of, in U.S., 5b

41 Need to keep bodies of data decentralized, 13d Statistical tabulations, special health uses of routine, Problems of, 16c 4a United Kingdom position, 21a Subpoena of private information: Open-ended vs. closed-end arrangements, 28b In malpractice suits, 7b Registration number to unify records used in Scandi­ General discussion, 10a navia, 12b Use of Presidential power to resist subpoena, 1lC Research requirements of, 16d “Trade-offs” as means of accommodating private de­ Researchers: mands and public needs, 6c, 1la Often insensitive to public reactions, 9b Training health statisticians, 18a, 20b Liability to damage suits on responding to subpoenas, Conceptualizing statistical problems as a way of 10b spreading supply of statisticians, 18b f Scientists: public questioning of them motives and Need for unrestricted training grants, 19c methods, 9b Universities poor places to teach problem-solving, Small-area statistics 16a, 19c: 21b Need to relate to program questions, 18d, 28c Population laboratories as training places, 21c Need to make expertise available at local levels, 19b Uncertainty as basis for public concern when personal Needed to attack today’s problems, 19d information is sought, 5d f Possibility of using National Health Survey data to United Planning Organization arrangement for protecting estimate local area relations, 28c data, 9a, Llb Information now gathered in vital statistics of wrong Vital registration system: kind, 28d Proposal that legal items be separated from statistical Present geographic classification system inadequate,. items, 7d, 15b, 17b, l~b, 20d, 21c 29a Direct reporting of health information to statistical Social report, efforts looking toward agencies, 13d Meaning of “social indicator”, 30b Need: to study the system, 15~ to seek means of im­ Would quantify relations, trends, needs, possible proving it, 21a; present system antiquated, 26d action courses, 30d Need for joint system of data collection with census, Need for less aggregated data, 31c using flexible sampling, 26d ff Social Security records, potential for medical research, Voluntary consenk See consent 5b f, 17b Socioeconomic characteristics (e.g., occupation, in- come, education) as analytic tools, 29c

42 *U. S.GOVERNMENT PRINTINGOFFICE :19700-402-100 OUTLINE OF REPORT SERIES FOR VITAL AND HEALTH STATISTICS

Public Health Service Publication No. 1000

Progyams and collection pvoceduves.— Reports which describe the general programs of the National Center for Health Statistics and its offices and divisions, data collection methods used, definitions, and other material necessary for understanding the data.

Sevies 2. Data evaluation and methods research. —Studies of new statistical methodology including: experi­ mental tests of new survey methods, studies of vital statistics collection methods. new analytical techniques, objective evaluations of reliability of collected data, contributions to statistical theory.

Series 3. Analytical studies. —Reports presenting analytical or interpretive studies based on vital and health statistics, carrying the analysis further than the expository types of reports in the other series.

Series 4. Documents and committee )-eports. — Final reports of major committees concerned with vita 1 and health statistics, and documents such as recommended model vital registration laws and revised birth and death certificates.

Series 10. Data jrom the Health lntevoiew Survey. —Statistics on illness, accidental injuries, disability, use of hospital, medical, dental. and other services, and other health-related topics, based on data collected in a continuing national household interview survey.

Series 11. Data from the Health Examination Suvuey. —l)ata from direct examination. testing, and measure­ ment of national samples of the population provide tbe basis for two types of reports: (1) estimates of tbe medically defined prevalence of specific diseases in tbe United States and the distributions of the population with respect to physical, physiological, and psychological characteristics; and (2) .malysis of relationships among tbe various measurements without reference to an explicit finite universe of persons.

Series 12. Data fvom the Institutional Population Su~ceys. —Statistics relating to “the health characteristics of persnns in institutions, and on medical, nursing, and personal care received, based on national samples of establishments providing these services and samples of the residents or patients.

SeVies 13. Data fvom the Hospital Dischavge Survey, —Statistics relating to discharged patients in short-stay hospitals, based on a sample of patient records in a national sample of hospitals.

Serzes 14. Data on health resources: manpowev and facilities .—statisti~s on the numkrs, geoivaphlc distri­ bution, and characteristics of health resources including physicians, dentists, nurses, other health manpower occupations, hospitals, nursing homes, and outpatient and other inpa~icnt facilities.

Sevies 20. Data on /normality. -Various statistics on mortality other than as included in annual or monthly reports— special analyses by cause of death, age, and other demographic variables, also geographic and time series analyses.

Sevies 21. Data on natality, marriage, anddiuorce. —Various statistics on natality, marriage, and divorce other than as included in annual or monthly reports— special analyses by demographic variables, also geographic and time series analyses, studies of fertility.

SeVies 22. Data fyom the National Natality and Mortalit~ SllvL,eys. —Statistics on characteristics of births and deaths not available from tbe vital records, based on sample surveys stemming from the~e records, * including such topics as mortality by socioeconomic class, medical experience in the last year of life, characteristics of pregnancy. ~,t:.

For a list of titles of reports puhlishedin these series, write to: Office of Information ?Jational (’enkr for Health f+ta~istics ! ~.s Puij]jc Iiealth Ser\ice Rockville, hl(l. 208,52