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Consumer Health Informatics and Personal Health Records 17 Consumer Health Informatics and Personal Health Records 17 Kevin Johnson , Holly Brugge Jimison , and Kenneth D. Mandl After reading this chapter, you should know the • Defi ne patient portals, personal health records, answers to these questions: patient-controlled health records, and per- • What is the central tenet of consumer health sonal health applications. informatics? • What are the issues that biomedical informat- ics research can address relating to consumer 17.1 Introduction communication, decision-making, and infor- mation access needs? Complexity and collaboration characterize • Although technology is a major focus of the health care in the early twenty-fi rst century. discussion around consumer health informat- Complexity arises from a deeper or more ics, we realize that any technology of interest sophisticated understanding of health and dis- today will be obsolete in the next 10 years. eases, wherein etiological models must take However, the issues this technology is trying to into account both molecular processes and address will continue to be prevalent. With that physical environments. Collaboration refl ects in mind, what are the larger biomedical infor- not only inter-professional collaboration, but matics topics this technology is being used to also a realization that successful attainment of address? optimal well being and effective management of disease processes necessitate active engage- ment of clinicians, lay persons, concerned fam- ily members, and society as a whole. This K. Johnson , MD, MS (*) Department of Biomedical Informatics , chapter introduces technologies forming the Vanderbilt University School of Medicine , foundation of consumer health informatics , 2209 Garland Ave , Nashville 37232 , TN , USA including personal health records (PHR), e-mail: [email protected] patient portals , personal health applications , H. B. Jimison , PhD, FACMI and social networking . We will illustrate how Consortium on Technology for Proactive Care, each of these tools embraces the complexity of Colleges of Computer & Information Sciences and Health Sciences , Northeastern University , health care and makes possible the collabora- 360 Huntington Ave, WVH 476, tions necessary to engage consumers in health Boston 02115, MA , USA promotion, disease management, and preventive e-mail: [email protected] K. D. Mandl , MD, MPH Children’s Hospital Informatics Program , Harvard Medical School, Boston Children’s Hospital , The authors acknowledge and thank the co-authors of the 300 Longwood Avenue , Boston 02446 , MA , USA previous chapter edition, Patricia Flatley Brennan and e-mail: [email protected] Justin Starren. E.H. Shortliffe, J.J. Cimino (eds.), Biomedical Informatics, 517 DOI 10.1007/978-1-4471-4474-8_17, © Springer-Verlag London 2014 518 K. Johnson et al. care. In the fi rst part of this chapter, we intro- Patient engagement is not purely driven by the duce four common health care challenges that patient. Seminal work by sociologists such as consumer health informatics addresses: con- Goffman ( 1959 ) and psychologists such as sumer engagement, information sharing, com- Skinner ( 1938 ) and Deci and Ryan ( 1985 ) munication and decision facilitation. We then observed that consumers may become engaged describe the history of consumer health infor- because of an innate desire to be rewarded by matics and the tools commonly available to participation or through external rewards. These address the above challenges. We conclude the observers of human behavior have reinforced the chapter by describing many of the emerging notion that in many individuals, innate desire trends in the discipline and some of the con- motivates engagement without the apparent pres- tinuing opportunities. ence of an extrinsic reward or punishment as a consequence of engaging in the activity. These observers also note, importantly, that not every 17.1.1 The Challenge of Improving person will have an innate desire to engage, or Consumer Engagement may lack the desire as the perception of the cost of engaging increases. For these individuals, Contemporary consumers are under greater extrinsic motivators (money, material goods, and pressure to participate in their own care than praise) may catalyze behavior change. It is also have patients at any time since the emergence the case for many of these individuals that peers, of modern health care. Patient participation family members, and even others in their social takes many forms, including shared decision- network may provide a surrogate for the patient’s making, self- care, and collaborative practices lack of engagement by actively participating in (Mead and Bower 2000 ). The role of the con- information gathering and health care decision sumer as a full partner in health promotion and making. All of these observations may be disease management has never been more nec- addressed by consumer health informatics essary than now. In the distributed managed- researchers. care models of health care, consumers serve as their own case managers, brokering care from generalists, specialists, and ancillary groups. 17.1.2 The Challenge of Improving Rarely do consumers receive all of their clinical the Information Available services from a single provider. Although to Consumers health information technology, such as the elec- tronic health record, provides an integrated data It has long been recognized that information repository and communication service, the sharing can lead to improved decision making view of the patient from a single electronic and health care system vigilance. Pamplets, new- health record often will not include a record of paper articles, and phone communication about services provided through the continuum of disease outbreaks were once the only methods to care. Moreover, for some patients, the inability accomplish information dissemination. These to access this record may represent a barrier to methods were suboptimal in their ability to optimal care delivery (Detmer 2003 ). Consumer address challenges with health literacy, numer- health informatics as a subdiscipline is founded acy, widespread access, appropriately timed on this need for access. A central tenet of con- access, or proper formatting/tailoring (for exam- sumer health informatics is that although not all ple, so that they could benefi t adolescents as well patients will participate, patients participating as adults, or men as well as women.) The advent in their health care leads to higher quality care of the Internet, interactive television and a host than that which is achievable without patient of widely available home technologies provide a participation. rich source of tools to address this challenge. 17 Consumer Health Informatics and Personal Health Records 519 17.1.3 The Challenge of Improving 17.2 Historical Perspective the Communication Among of Consumer Health Consumers and Providers Informatics Consumer health informatics also strives to 17.2.1 The Rise of Consumer- improve consumer-provider interactions by both Oriented Health helping to prepare patients for meaningful dis- Communications cussions with their clinicians and by facilitating shared decision making. A full discussion of the In essence, what we think of as consumer engage- efforts in this area may be found in the chapter on ment refl ects a shift from the patient as the silent Telemedicine (Chap. 18 ). recipient of ministrations from a wise, benefi cent Consumer-to-consumer communication has clinician to an active collaborator whose values, been an important source of relevant information preferences, and lifestyle not only alter predispo- for patients with diseases of all sorts. Before the sition to certain illnesses but also shape the char- Internet became available, this type of communi- acteristics of desirable treatments. cation was diffi cult, though many health care Patients, family members and the general pub- institutes, churches, and communities developed lic have long-played an active role in health care support groups for common diseases or interests and have actively sought information from health (Lieberman 1988 ). professionals and government agencies. During the early twentieth century, the US Federal Children’s Bureau served as a major source of 17.1.4 The Challenge of Improving health information for the public. Mothers could Consumer Decision-Making write to this federal agency, asking questions about normal child development, nutrition, and One of the most important aspects of consumer disease management. Written materials, such as health informatics has to do with moving beyond letters and pamphlets served as the primary providing background health information toward mechanism for delivering information that sup- helping consumers make quality health decisions ported lay people in their handling of health chal- and appropriate actions. Before the increased lenges. Patient education companies such as availability of home computing and the Internet, Krames 1 would partner with organizations like patients facing diffi cult decisions used informa- the American Heart Association to provide gen- tion available in public libraries or sent to them eral printed material on heart disease or with the (via stamped, self-addressed envelopes!) They American Cancer Society to provide information relied on conversations and advice from family, on cancer. As television became commonplace, close friends, church members, other patients, or broadcast and reproduction media including tele- doctors. Importantly, they made decisions
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