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P The temperature really gets elevated For the most part, the study of the effec-

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8 when there’s talk about mandated rather tiveness of treatments has been grounded o u - T g 5 e he current health care reform debate than recommended clinical guidelines (buried?) in the race to find new drugs and r 0 s a t 9 has created interesting collisions of based on comparative effectiveness devices to bring to market. The incremental m e 9 H d Topinion. Here’s one that’s perhaps research, and about value-based purchasing gains in life expectancy or time to disease unexpected: there is resistance to finding that might limit access to exorbitantly progression as measured in clinical trials of out which medical treatments actually expensive treatment that has no greater new patentable treatments has been pretty

work best. benefit than less pricey alternatives. much the only measure of how well some- There are those who are opposed to thing works. There has been little assess- A engaging in what’s being called comparative “...the study of the effectiveness of ment of whether that extra month gained effectiveness research — determining the rel- treatments has been grounded was worth the misery of toxic effects of ative efficacy of treatments and drugs devastating chemotherapy. And pharma- D (buried?) in the race to find new drugs w already on the market. Wouldn’t we want to funded clinical trials really have no incen- know what treatments work best? And tive to publicize that an older drug (maybe

w and devices to bring to market.” wouldn’t we want to take advantage of that off patent, maybe cheaper) is actually better w V knowledge to provide people with the best But clearly we need to do something to than some new investigational agent. So . s and least dangerous treatments for diseases? get the U.S. health care system out of the pit those results don’t necessarily get much l

c Apparently, some people don’t think so. of being 37th on the World Health press. There’s little incentive to study O .

e Opponents have raised the flags of one-size- Organization’s ranking of overall health which of the dozens, sometime hundreds, d fits-all medicine, of limitations on physi- care, despite being by far the most expen- of FDA approved treatments for a particu- u cians’ autonomy to prescribe and of denying sive system in the world. lar indication work best. Certainly no drug / C h patients choices and treatment options. We Why, one might ask, hasn’t comparative company would finance such a trial unless

e are so caught up in the American ideal of effectiveness research been done before? In it was absolutely sure its drug would win. a self-determination that we are threatened by a system where the provision of health So effectiveness research has been limited l t the idea of “standardized care” or that we

A services is driven by market forces, there’s for the most part to those new drugs for h might be forced to use the best, safest, most been little incentive. This has been exacer- which there’s a marketable and profitable _

a effective treatment for a disease. What’s at bated by the insulation of the consumer application. d issue here is that the best treatment might from the cost of health care services. In the What we have not done in any systemat- C v sometimes be the cheapest, or the oldest or past, we didn’t know what services and ic way is an evaluation of whether what we o not the new drug that “Bob’s cousin got.” drugs actually cost if the fees didn’t come call the “standard of care” for many dis- c a We’d rather be swayed by glitzy advertising out of our personal pockets. Who cared that eases or conditions is really the best way to Y c and bragging rights to “the newest” thera- the new antibiotic cost 20 times more than treat it. That’s why “standard of care” in the y pies than by having evidence that deter- the generic drug that would have worked U.S. varies by geographic region. And cer-

mines what actually works best. just fine? tainly there has been little or no research into best treatments for those rare and

B orphan diseases where the market is just too small to attract the interest of pharmaceuti- In This Issue cal companies. Now that federal money has U Letter from the Director ...... 1 been designated via the American Recovery Letter from the Editor...... 2 and Reinvestment Act of 2009, comparative effectiveness research will be funded to the L Student Fieldwork...... 3 tune of $1.1 billion and we may finally get From Patient to Patient Advocate at Dartmouth-Hitchcock Medical Center ...3 impartial and concrete information to help L On the Frontline in the “War of Words” Over Health Care Reform...... 4 us make truly informed decisions about African Services Committee and Their Clients: Health-Motivated, treatment options. E Self-Motivated ...... 5 The advocacy piece in all of this is com- Opportunities for Advocacy with Adolescents...... 6 plicated. Health advocates have a macro

T obligation to consider the best use of limit- Developing Resources for Patients with Breast Cancer...... 6 ed resources as measured in spendable On My Way...A LEND Fellow Experience...... 8 health care dollars. We also have an obliga- I HAP Professional Development Series: Social Return on Investment...... 9 tion on the micro level to protect an indi-

N Faculty News ...... 10 vidual patient’s autonomy and to support Using Patient Voice to Construct an Emergency Medicine Clerkship .....10 the personal choices she or he might make Faculty Profiles: Christobal J. Jacques and Jennifer Buckley...... 11 in deciding about treatment options. The The MA in Health Advocacy Program is supported by: The Fund for Sarah Lawrence Continued on page 2 Letter from the Editor Student Fieldwork

By Barbara Robb policy for HealthBeat. Celia Bertuzzi was a General Hospital and Susan Kingsbury From Patient to Patient Advocate at LEND Fellow, advocating for full inclusion was a patients relations intern at his issue of the Bulletin focuses on stu- of people with developmental and related Dartmouth-Hitchcock Medical Center in Dartmouth-Hitchcock Medical Center dents in the Health Advocacy disabilities. Shannon Irey worked with the New Hampshire. Program. We’ve asked some of them to African Services Committee, an organiza- HAP faculty continue their own advocacy T By Susan Kingsbury night in the fall of 1998. In the following (along with 30 other new employees and write about their fieldwork experiences. tion in Harlem that provides services to work. In this issue, we include an abstract of years, I continued to be seen there for outpa- summer interns) and from then on was Health care reform, the rights of patients with immigrants. Ashley Gephart worked for a presentation by Constance Peterson, who ucky me. I got to spend six weeks of a tient care. Without exception, the care from accepted as a professional equal. I was disabilities, health care for immigrants, ado- the Adolescent AIDS Program at created an emergency medicine clerkship beautiful summer working indoors, critical to follow-up was supportive and entrusted with access to the patient database lescent health, HIV/AIDS, breast cancer, hos- Montefiore Medical Center. (And Ashley program at NewYork-Presbyterian Hospital. full time, for no pay. It was one of the compassionate. and offered free rein to explore “anything pital care—these are some of the major topics Fletcher worked on HIV/AIDS outreach, Our newest faculty member, Christobal L most valuable experiences of my life. In my An earlier misdiagnosis elsewhere had led that will help you during your fieldwork in health care today. And all are fields where testing and education among adolescent Jacques, is an advocate for people with fieldwork at the Dartmouth-Hitchcock to a need for self-advocacy for appropriate here.” I met with the Center for Shared HAP students worked in the past year. women through Project KISS at NewYork- HIV/AIDS. Jennifer Buckley has also joined Medical Center, I had a chance to make a attention and treatment. Well into recovery at Decision-Making, CHaD and the Boyle Naomi Freundlich found herself in the Presbyterian Hospital.) Deborah Teevens the HAP faculty, as fieldwork coordinator. difference in people’s lives. I gained advo- DHMC, and reflecting on that experience, I Community Pediatric Program, the breast midst of a “war of words” about health care Gangl did an internship at the Gillette cacy experience in the patient relations mentioned to one of the specialists who treat- cancer support office and the palliative care reform while writing a blog about health Breast Cancer Center at Massachusetts department and facilitated illness narrative ed me that I would like to advocate for other coordinator/chaplain at the Norris Cotton workshops. patients The doctor referred me to the care Cancer Center, and I accompanied a social Located in The Upper Valley carved by the management team director, who told me that worker on a house call to arrange an elderly River that runs between New only with credentials could I be a paid patient couple’s Medicaid participation. HAP Orientation 2009 Letter from the Director Hampshire and Vermont, Dartmouth- advocate. My idea lay dormant for a couple My supervisor, Lynne Richards, invited me Hitchcock Medical Center (DHMC) includes of years until I discovered the summer Sarah to shadow her daily; I sat in her office while The Health Advocacy Program welcomed 14 new students in August 2009, as Continued from page 1 Mary Hitchcock Memorial Hospital and the Lawrence “Writing the Medical Experience” she fielded phone calls, emails and walk-in well as 3 who entered the Program last January. Each year during Orientation outpatient clinic. They share facilities nestled workshop, which introduced me to the visits from patients and family members. Week new students hear presentations about the fieldwork experiences of most important piece perhaps is to first on 225 acres of wooded land in Lebanon, Health Advocacy Program. Looking back, it When the situation involved a concern from second-year students and recent graduates of the program. advocate for the research that’s needed to New Hampshire. The hospital, a Level 1 is as though a path opened up in front of me an inpatient, we made a “field trip” to the find out what actually works. The balance Trauma Center, serves a population of 1.6 and I followed it. room. Complaints ranged from a rude nurse between the polar opposites is to preserve million in the New England area. There are to dirty sheets to a lost hearing aid to a seri- options — and let people choose among the walking paths in the woods surrounding the “...only with credentials could I be a ously ill patient’s complaint about medical best available choices of proven and effec- medical complex and a four-story skylighted paid patient advocate.” care. My case notes included my observa- tive treatments. But first we have to deter- interior mall at the hub of all services. tions and assessments. Afterwards Lynne mine what those effective treatments are, Pausing in this area, one is likely to observe I intended all along to do my summer and I discussed the incident: what had been without the bias and pressure intrinsic to sotto voce consultations among clinicians, fieldwork at Dartmouth-Hitchcock. My the initial concern and what else was the marketplace. staff walking briskly from task to task, and own experience there, in addition to all I revealed? Had we been able to reassure the patients and families awaiting meetings with had read and heard, convinced me of its patient that steps would be taken toward the shared decision-making team. The envi- excellence, and I wanted to spend the sum- education, resolution or restitution? ronment is light and green, from medical mer in my home state. It was my hope that From shadowing I learned the path taken scrubs to the grass and trees visible from the applying to an institution that was far from by patient concerns. It begins in the patient Alumnae/i News many windows to the interior hall carpet. Sarah Lawrence and unfamiliar to the relations office and, if the situation is not eas- DHMC is an exemplary medical center and administration, as it had not been a previ- ily resolved, is directed to the practice coor- Shawna Irish, HAP ’07, is the new teaching hospital. Dartmouth College (head- ous fieldwork site, would not be a deter- dinator in the appropriate department, and Alumnae/i Relations Correspondent ed by Jim Yong Kim, M.D., who cofounded rent. During the course of the Fieldwork to higher administration and risk manage- for the Health Advocacy Program. Partners in Health with Paul Farmer) and Seminar, I expressed my keen interest in ment when necessary. Please send her news of your work, Dartmouth Medical School are just down the Dartmouth and did much of the preparato- My specific project was to become familiar personal achievements and mile- road. The Dartmouth Institute for Health ry footwork myself. During winter break I with the Centers for Medicare and Medicaid stones to be edited and submitted Policy & Clinical Practice (representing six made a “courtesy call” on the Care Services (CMS) guidelines on dealing with First-year HAP students during program orientation. to the Sarah Lawrence Magazine. key areas of education and initiatives for Management Team director, Michele patient complaints and grievances, and to Feel free to send anything that’s change, including the Center for Informed Blanchard, and met Lynne Richards at the draft a revision of the DHMC policy so that it happened to you in the last couple Choice) is next door. The hospital is a leader in same time. Making a personal call helped would be in compliance with the guidelines. of years. Shawna can be reached such practices as shared decision-making and greatly to facilitate my fieldwork place- I participated in a webinar on the subject and at [email protected] www.slc.edu/health_advocacy palliative care, and counts Dr. Ira Byock, an ment, I believe. This office at DHMC had reviewed the websites of other large hospitals authority and author of a number of books on never had an intern and wasn’t sure what and contacted them by telephone to learn The HEALTH ADVOCACY BULLETIN is a publication of the Health Advocacy death and dying, as its director of Palliative would be asked of them, or who she might about their policy guidelines for matters such Medicine. There are major research sites at Program at Sarah Lawrence College, One Mead Way, Bronxville, NY 10708. be, or what Sarah Lawrence is all about. a forming a grievance committee. DHMC, including the Center for Shared Reassured, they worked with our field- As an adjunct to the patient relations Program Director: Laura Weil Decision-Making and CHaD (Children’s work seminar faculty to iron out the agree- work, I proposed to the department director Editor: Barbara Robb Hospital at Dartmouth) and the Borwell and ment for my participation in the patient two hour-long sessions of illness narrative Email: [email protected] Rubin Research Buildings. Dartmouth services office of care management. Soon writing workshops. I was invited to lead Medical School receives more than $111 mil- after classes ended, my summer advocacy them with clinicians from Care Management All material in the HEALTH ADVOCACY BULLETIN is the property of the authors and may not lion annually in sponsored research. experience began. and Chaplaincy. The outcome of offering a be reprinted without permission. Opinions expressed are not necessarily those of the editor or My introduction to Dartmouth-Hitchcock As I eased into my summer internship, I group of health care providers an opportunity of the Health Advocacy Program. Medical Center was through the emergency became part of a huge community of health room doors when I needed surgery one mid- advocates. I spent the first day in orientation Continued on page 4 2 3

From Patient to Patient Advocate at Dartmouth-Hitchcock Medical Center African Services Committee and Their Clients:

Continued from page 3 I found that I had been well prepared for hold my own. I heartily agree with Albert Health-Motivated, Self-Motivated this fieldwork experience by just one year of Einstein’s remark, “Luck favors the prepared to voice their experiences and emotions was study at Sarah Lawrence. The reading we do mind.” The Health Advocacy Program pre- successful and touching, and met with heart- for class is professional and cutting-edge and pared me well. By Shannon Irey Escort session to determine whether the time my function was to aid in the develop- felt thanks. From this grew an invitation to presents diverse points of view; the writing service successfully met the needs of the ment of new programs to assist these same Susan Kingsbury is a graduate student in the frican Services Committee, through engage the Heart-to-Heart monthly cardiac requires all the intelligence, literary skill, and community. The assessment was commis- populations after their immigration. Health Advocacy Program. its dedication to immigrant popula- patient group in giving a voice to their expe- tenaciousness that we can muster. During six sioned by the AIDS Institute, testimony to I was first introduced to African Services Ations in City, has estab- the AIDS community’s dedication to self- by Sarah Lawrence College, through a cam- riences. To do this, I returned to DHMC a valuable weeks with the competent and lished a reliable resource for health educa- month after my fieldwork ended. engaged people at DHMC, I found I could evaluation. I created anonymous surveys pus discussion among undergraduate and tion and community partnerships. Located and conducted interviews with partici- graduate students with backgrounds and in Harlem, the non-profit began nearly pants to determine the efficacy of the pro- interests in health care. Many of the pre-med thirty years ago as a collaboration of gram. Through this work, I was able to students had worked in their testing center, Ethiopians united to assist fellow immi- understand just how isolating and confus- learning to assist with spit tests, which On the Frontline in the “War of Words” grants from their own country. Today, the ing an immigrant’s experience can be. The screen for HIV/AIDS through saliva, and organization provides a plethora of servic- appreciation the participants have for the other tests. These students spoke highly of Over Health Care Reform es to 10,000 people each year. Clients are Hospital Escort program and African their experiences and contact with clients from all over the world, including African Services Committee as a whole is best through African Services. I became excited countries and the Caribbean; even non- expressed by a client who explained, about the prospect of an internship there, By Naomi Freundlich evening news or listening to the various TV blog. Coincidentally, the Program Associate immigrants come to African Services. “These services in this department have and spoke with HAP faculty about it. We and radio commentators who spin their who had worked with her on health policy Additionally, the Committee has devel- restored my confidence and self-esteem.” contacted their Assistant Program Director, he battle over health care reform has favored take on the legislation. had just left. With her film coming out and oped a sister office located in Addis Ababa, envisioning work in program development. essentially come down to a “war of This media frenzy on health care reform debate on health care reform heating up, she Ethiopia with three HIV and CD-4 testing “Through this work, I was able to My background in HIV/AIDS prevention Twords,” with opponents and support- has, during Congress’s recess, reached a was very interested in my proposal for an sites throughout the country. The Harlem and work abroad put me in a position to understand just how isolated and ers frantically trying to gain the upper hand fever pitch. Just when we feel that we have a internship. office strives to provide free and confiden- assist him with creation and management of with the American public. For the last four handle on something — President Obama’s tial HIV, STI, TB and pregnancy testing at confusing an immigrant’s experience their health care team. months I have been immersed in this battle, support of a public plan option, for example “...HealthBeat advocates for no cost to the client. African Services’ onsite can be.” Working with African Services writing about health policy for HealthBeat, a — media reports begin questioning the sta- fundamental changes that will help testing allows for close interaction with Committee has given me insight into the blog published by The Century Foundation, tus quo and making conjectures about how New York City’s most vulnerable popula- African Services Committee consistently complex client-based needs of the a progressive think tank. Working on the Obama has cut deals with drug companies cut some of the waste, greed and tions. African Services offers assistance to transforms their projects based on current HIV/AIDS epidemic, not only abroad but in blog entails researching and writing my own or insurers and sacrificed aspects of reform subpar care out of the system.” those who need it most. Along with testing HIV/AIDS research. After the Center for New York City. I sincerely hope to utilize posts and responding to comments from we thought were nonnegotiable. It’s been a services, the organization provides coun- Disease Control released statistics display- this perspective into HIV/AIDS research to readers, most of whom are very knowledge- rapid-fire education for me, a print journal- The message from Maggie’s book, her seling and housing assistance to people liv- ing STI and HIV increases among young gain a stronger understanding of successful able about health care issues. I’ve also ist with more than 20 years’ experience, in blog and the new film is an important one ing with AIDS. Legal aid, English language adults of high school age in New York City, programs and policies for this population. learned how to “post” articles, using blog- how “spin” and downright gossip get that strikes at the fundamental problems classes and food pantry services are also African Services teamed with the Bronx African Services works to eradicate this epi- ging software to turn Word documents into a passed along as reporting on many of inherent in the health care industry. In this available for all walk-in clients. International School. The program, demic one client at a time; this piecemeal form that can be viewed online. today’s blogs. As a writer and editor for country, where we spend twice as much as Another important program the designed by African Services, selects vol- approach is a healthy model for future publications like Business Week and The New any other country in the world on care, we Committee provides is a Hospital Escort unteers to act as student health ambassa- HIV/AIDS work. The mission of African “...we have found ourselves responding York Times, I had always been trained to back should be able to claim the mantle of the best once a week for all interested clients. The dors. These students are trained at African Services to improve “the health and self-suf- to near weekly attacks on reform...” up what I wrote with verifiable sources and health care in the world as well. As we are escort will assist the participant by making Services Committee to talk with their peers, ficiency of the African community in New to dutifully check facts. That is not always well aware, that is not the case. With some 46 their medical appointments and accompa- or even loved ones, about the implications York City and beyond” is clearly echoed As Congress works on hammering out a the case in the blogosphere. million Americans uninsured, we lag other nying them to the hospital. Every Hospital of STIs and HIV and encourage them to get in client comments. As one client said, health plan, Maggie Mahar (the Health At HealthBeat, we try very hard to uphold developed countries in infant mortality and Escort introductory session includes tested. These students are predominantly “African Services has been my rock in every Fellow at the foundation) and I have been journalistic standards. The impetus behind preventable death, as well as in other key HIV/AIDS facts, and all participants are in the most at-risk populations that African aspect of my life and my family.” Today, the advocating for fundamental changes in the the blog is Maggie Mahar, a former Senior measures of quality. The reasons are compli- encouraged to get tested on-site at African Services works with: immigrants from HIV/AIDS sector has brought forth a chal- way health care is structured, delivered and Editor at Barron’s and the author of the book cated, but in Money-Driven Medicine Mahar Services. The service ensures that those in Africa and Latin America. lenge to serve individuals as well as nations. paid for. In addition, we have found our- Money-Driven Medicine: The Real Reason produces a scathing portrait of the vast $2 need can seek medical care without fear or I was able to be a part of this initiative To deny the people of the epidemic is to selves responding to near weekly attacks on Health Care Costs So Much. Published in 2006, trillion health care industry (from the drug reservation. One client says, “Considering from conception to execution. Initially, I deny the power of motivation. reform by conservatives, debunking allega- Maggie’s book has now been made into a industry to for-profit hospitals to device my immigrant status, I was treated as an served as a contact with Bronx Shannon Irey is a graduate student in the tions that reform will bring rationing of care, powerful documentary by Alex Gibney, pro- makers and health insurers) where the bot- individual and not an alien.” Alpha International School to develop the pro- Health Advocacy Program. limited choice of providers, a government ducer of such notable films as Enron: The tom line and corporate profits have become Kassogue is an immigrant from Mali who gram guidelines. I then had the opportuni- “takeover” of medicine and the gutting of Smartest Guys in the Room and the 2007 the supreme goal, rather than excellent med- now heads the Hospital Escort program. He ty to visit the school and introduce the stu- Medicare — among other erroneous charges. Academy Award Winning documentary, ical care. The result: we have a lot more care remembers a time when he was new to this dents to this valuable resource to help their In the fight for reader opinion, the “blogos- Taxi to the Dark Side. in this country, but not better care. country and could not fathom seeking med- community. The students’ enthusiasm and phere” has lately been overrun with pundits, I came upon Maggie’s blog and other Ultimately, our system of profit-motivated ical care with his limited English language maturity when speaking about difficult many pursuing hidden agendas. Century Foundation publications on health medicine has created a dysfunctional system skills and ignorance of the health care sys- issues concerning STIs and HIV/AIDS was The truth is that very few people will actu- care while researching a paper for Health where procedure-driven medicine is reward- tem. Today, he deftly moves between his inspiring to witness. ally read HR 3200, Congress’s 1000-plus page Policy. I discovered that they had an official ed above compassionate care, where patients country’s native dialects, English and In the past, I have worked with women’s bill that lays out the Democrat’s version of paid internship program, but only for the are offered an excess of the newest, most French when speaking with clients, as well groups in South Africa and Ghana dis- health reform, but nearly everyone has an summer, and I was looking for a spring expensive, but not necessarily the best medi- as communicating in other languages to cussing the seriousness of HIV/AIDS for opinion about it. How do they form their placement. Nonetheless, I emailed Maggie cine, and suffer for it. Mahar draws on more explain the health care system. themselves and their community. I was opinions? Mostly by reading newspapers, directly, telling her about my background As a Quality and Advocacy Intern, I per- able to experience this type of face-to-face magazines, watching short clips on the and saying how informative I had found her Continued on page 10 formed a needs assessment of a Hospital work through African Services, yet this

4 5 Opportunities for Advocacy with Adolescents Developing Resources for Patients with Breast Cancer Continued from page 6 By Ashley J. Gephart health during her undergraduate studies at process of determining the most pressing root Important advocacy issues such as Grant her help, I was exposed to issues regarding . This friend previously cause and developing a new action plan to tors and clinicians about the services they Writing and Ethics were also on my intern- IRB (Institutional Review Board) informed or some of us, memories of adolescence worked for AAP and sent the program direc- address the correlating issues affecting Bronx provided, so that I could supplement, edit ship radar. Once again, my supervisor consent, treatment, patient follow-up and are filled with times spent with friends, tor an email with my resume attached. I later adolescents. As the C2P intern, it will be my and update the website with information proved an excellent resource and provided confidentiality, as well as ethical issues Fhigh-spirited athletic events, school learned that AAP had already reached its full duty to eventually lead the resulting subcom- and links to current resources. her perspective on these issues. She applies involved in research studies. I was able to dances and experiments with new hairstyles. intern capacity by the time my resume mittee that will focus on the identified root My supervisor and I discussed different for many grants and discussed with me learn a great deal from this extraordinary But for many New York adolescents, those arrived, but the fact that I came highly recom- cause. C2P subcommittee leaders are in ways to present information to promote easy several she recently handled. Reviewing part of my internship. years are also marked by a diagnosis of HIV. mended by my friend earned me an inter- charge of setting meeting agendas and deter- patient access and understanding. In addi- those grant applications helped me gain a One of the most powerful learning From 2000 to 2006, 3,596 New York adoles- view. I have always understood that net- mining what structural changes (i.e., changes tion, I researched and provided resources for better understanding of the strategy behind opportunities occurred towards the end of cents aged 13 to 24 received such a diagnosis. working is an important aspect of profession- in programs, policies and practices) would be the Media and Support Group sections of the the process. my tenure, when I observed a patient Fourteen percent of males and twelve percent al life, but this was my first personal experi- most effective to deal with the identified root site. One of the more interesting aspects of undergoing a surgical procedure. From an of females had a concurrent HIV/AIDS diag- ence with its effects. I will continue to make it cause. The subcommittee leader and the other my project was my work with those support “...I was exposed to a myriad of addi- advocacy point of view, I experienced a nosis (i.e., the AIDS diagnosis was within 60 a point to foster relationships with others coalition members are responsible for com- groups. As I learned from a talk by HAP tional advocacy issues.” moment that I will not soon forget. The sur- days of the HIV diagnosis), indicating an HIV inside and outside of the professional world, pleting action steps and ultimately attaining graduate and advocate Maggie Hoffman in geon, a powerful figure at the hospital, held diagnosis late in the course of infection. as you never know where a fabulous collabo- the structural change objective. our first-year course work, the issue of sup- Ethics issues were also on my list of inter- the patient’s hand until she was asleep. While the Bronx has the second smallest pop- ration or job opportunity may be hiding. While I was initially hired as the C2P port is a sensitive one. In researching various ests and my internship provided several Though the surgeon could have waited ulation of the five boroughs, it disproportion- intern, I have become involved in a lot of resources for breast cancer patients I discov- educational opportunities in this area. Not until the preparatory details were attended ately accounts for roughly 25 percent of all “...through my internships I am additional activities at AAP. During my ered valuable information on different sup- only was I able to attend tumor board meet- to and walked in when the procedure was reported cases of adolescent HIV diagnoses. interview, I expressed interest in being able ings in the Breast Center where treatment about to begin, that was not her style. becoming aware of the endless and port groups, how to choose a group and In response to the number of Bronx to be part of the outreach arm of the organi- what may be right for the individual patient. issues were discussed, but I was also invited Instead, she held the patient’s hand. This adolescents who are diagnosed and living exciting possibilities for advocacy.” zation. As a result, I’ve gained experience As a result, I am now armed with a vast to observe several meetings in the Proton lovely symbolic gesture remains with me as with HIV/AIDS, organizations such as the through involvement in outreach events, amount of information. Beam Center at Mass General. Barbara a reminder of what patient care should be. Adolescent AIDS Program (AAP) at I was asked to intern at AAP to help with a such as AAP’s “Get Tested Week” party and Winrich is involved in several research stud- With the blessing of my extraordinary Deborah Teevens Gangl is a graduate student in Montefiore Medical Center work tirelessly to program called Connect to Protect (C2P), a also by participation in trainings, such as an ies at the center, one of only a handful of supervisor, I was exposed to a myriad of the Health Advocacy Program. address both the personal/behavioral and research program made up of 15 urban sites AAP-sponsored LGBTQ issues training for additional advocacy issues. I attended a lec- such facilities in the country. Despite her fre- social/political aspects of the HIV epidemic throughout the U.S. and Puerto Rico. It draws youth service providers. ture on Research Participant Education and netic schedule, she was kind enough to among local youth. AAP is a leader in the field from federal, state and local resources to iden- While I am not entirely sure what aspect was able to speak with Enrico Cagliero, MD, introduce me to her advocacy work. With of HIV/AIDS among adolescents and “serves tify at-risk youth and create a profile of avail- of health advocacy I will pursue in the the director of the Research Subject as a local and national resource for those liv- able community resources. Disease and risk future, through my internships I am becom- Advocate Program at Mass General ing with HIV/AIDS; adolescents who are at- rates are compared with availability of servic- ing more aware of the endless and exciting Hospital. Given my interest in informed Upcoming Events risk for HIV infection; healthcare providers es in order to reveal neighborhood strengths possibilities for advocacy. Interning at AAP consent issues, I spent time researching who treat adolescents living with or at-risk for and needs. C2P prevention plans can include has solidified my interest in health outreach information regarding patients entering Monday, October 26 6:00 to 8:00 pm HIV infection; and lesbian, gay, bisexual, (but are not limited to) social marketing cam- and education and has reinforced the fact clinical trials. It turns out there is excellent Sarah Lawrence College, Heimbold Auditorium transgender or questioning adolescents, their paigns, peer outreach, social events, work- that I enjoy working with young people. At information available to patients at Mass families and caregivers.” Additionally, AAP shops and community capacity building. each coalition meeting, outreach event and General. The hospital devotes a great deal of Health, Science and Society Health Care Reform Series provides clinical assistance to youth diag- Recently, the Bronx C2P coalition identified training I meet new people who are doing time to making sure that patients are well The Devil Is in the Details: nosed with HIV, outreach and education to many root causes for HIV transmission interesting and crucial work in the field of informed, and provides staff with advice on Current Health Care Reform Proposals members of the community and clients, and among adolescents, such as low self-esteem, health advocacy. I am certain that both the obtaining consent from patients who do not also leads and participates in research aimed sexual exploitation and elevated rates of sexu- exposure and networking will have an speak English. After my exposure to this Panel discussion about the current health care reform proposals. Panelists include at identifying and addressing the factors that ally transmitted infections, that merit both impact on my professional future. important issue, I thought about this area as Mark Hannay, Director, Metropolitan New York Health Care for All Campaign; result in adolescent HIV transmission. significant attention and creative and feasible Rebecca Johnson, Health Advocacy Program faculty and Founder and Executive Ashley Gephart is a graduate student in the another excellent advocacy opportunity. I found my way to AAP through a friend action plans in order to effect change. Director of Cooperative Economics for Women; and Mark Schlesinger, Health Health Advocacy Program. I was able to sit in on a meeting of newly who was involved in adolescent public Currently, coalition members are in the diagnosed cancer patients and was Advocacy Program faculty and Professor of Health Policy and a fellow of the impressed by the care, concern and resources Institution for Social and Policy Studies at Yale University. Event is free and open available to these patients and their families. to the public. Given freedom to investigate, I observed Developing Resources for Patients with Breast Cancer patients in the resource room. This peaceful Monday, November 30 7:00 pm area is designed to allow patients a quiet Sarah Lawrence College, Heimbold Auditorium place to relax. It offers puzzles, a knitting cor- class. I put Mass General at the top of my help them better navigate our health care Organized by the Westchester End-of-Life Coalition By Deborah Teevens Gangl ner, computers, massage chairs and a private internship list after her fascinating talk. Laura system. This huge undertaking is a collabo- and hosted by the Health Advocacy Program area just for teenagers, as well as a beautiful his past summer, I spent five weeks at Weil knew of my interest and helped make ration among many public and private pro- garden. I examined the literature available An Evening with Andrea Raynor the Gillette Breast Cancer Center at the this opportunity a reality. After two semesters grams and is funded by the newly formed and paid attention to how it was presented Massachusetts General Hospital in of classes, I was anxious to start this intern- Cancer Resource Foundation. My job was to Andrea Raynor, hospice chaplain and clergy, shares her experiences serving T to the patients. I also introduced myself to hospice patients and police, firemen and morgue personnel at Ground Zero Boston. Having grown up in Boston, and ship. The experience did not disappoint. research Massachusetts facilities and the several of the social workers who run the arranging for cancer treatment for a close rel- My main assignment was to work on the services they offered to breast cancer following 9/11 and managing her own life after breast cancer diagnosis, as center and asked them about the material, ative, I was well aware of the hospital’s repu- Breast Cancer Resources Guide of patients. Consequently, during my tenure I described in her collection of essays, The Voice that Calls You Home, in a conver- how they selected it, and how they organ- tation for world-class research and cutting Massachusetts. The project, the brainchild of contacted many hospitals and free-standing sation with journalist Lee Woodruff. The program will be followed by a reception, ized it. They use an interesting system with edge care. Last fall HAP graduate Barbara my supervisor Karleen Habin, is a website medical centers and spoke with administra- book sale and signing. Event is free and open to the public. Reservations requested color-coded symbols that allows patients Winrich, who works at Mass General, was a designed for patients with breast cancer, cli- to [email protected] (subject line: Andrea Raynor Evening). and caregivers to zero in on the books that guest lecturer in the Models of Advocacy nicians, caregivers and family members to Continued on page 7 would be of most help.

6 7 On My Way...A LEND Fellow Experience HAP Professional Development Series:

By Celia Bertuzzi several of us attended a Disability Social Return on Investment Policy Seminar on Capitol Hill in END stands for Leadership Education Washington to advocate for full By Cipora Moskowitz Reynertson (another HAP alumna) of a profitable business for the local econo- in Neurodevelopmental and related inclusion for people with develop- MergerWatch Project explained, we are my, employing people from the communi- LDisabilities. There are 35 LEND mental and related disabilities. I ocial entrepreneurship was the com- “not reinventing the wheel.” Rather, to sur- ty and utilizing local waste material from Programs in 29 states. In Westchester, the aca- met with Jean Doyle, Legislative pelling focus of the HAP Professional vive, we must look toward partnerships banana plantations. Her business plan demic home of LEND and the Westchester Assistant to Nita Lowry, Rep. D-NY SDevelopment Series program held on and regional alliances, utilize existing incorporates a reasonable profit that can Institute for Human Development (WIHD) is and with the Legislative Assistant June 19th in the Campbell Sports Center resources and collaborate with other com- pay administrative staff salaries and create in the Department of Disability and Human to Kirsten Gillibrand, Senator, D- Conference Room. Rebecca Johnson, HAP munity groups. MergerWatch specifically a self-sustaining enterprise that fulfills a Development at the School of Public Health NY. I am proud to report that my faculty and Organizational and Fund works to either stop hospital mergers or number of unmet needs in the community. at New York Medical College in Valhalla. submission for the Seminar slide Development Consultant, introduced the counter any negative impact such mergers Sharpf’s eventual social return on invest- WIHD is one of 67 University Centers for show was accepted by Thomas panel of speakers, who talked about their might have on communities that are served ment goes far beyond her initial concern of Excellence in Developmental Disabilities Webb of The Disability Policy professional endeavors to find resourceful by the involved institutions. having a winning soccer team. Using local (UCEDD). All LEND Programs and UCEDDs Collaboration. This was my first solutions to social problems and create resources, her ideas have led to utilization are members of AUCD (Association of experience meeting with elected positive changes in their communities and “...creativity with resources, both of environmentally green manufacturing, University Centers on Disabilities), which is a officials, public policy experts, dis- beyond. created local jobs and improved access to network of interdisciplinary centers advanc- ability advocates and legislative Social entrepreneurship refers to activi- financial and technological, drives social education for girls. ing policy and practice for individuals with staff. It was an inspiring event to ties that employ business principles to innovation.” Examples of social entrepreneurs have disabilities and their families. The LEND represent the LEND Program create social change and create initiatives been found throughout history as cata- training programs are funded by the together with AUCD, UCP, that successfully respond to social issues. The keynote speaker, Founder and CEO lysts of systemic change in areas such as Maternal and Child Health Bureau (MCHB) AAIDD, NACDD and The Arc, all The activities are generally replicable, of Sustainable Health Enterprises (SHE) farming and medicine. The message of the Health Resources and Services promoting full inclusion of people sustainable and affect more than one sec- Elizabeth Sharpf, presented the idea that imparted to health advocacy professionals Administration (HRSA) of the U.S. with disabilities. tor of a social system. Social enterprise “charitable efforts alone are not enough to at the June 19th presentation is that revo- Department of Health and Human Services. As a participant at the Summit, may be funded entirely or in part by phi- address the breadth and complexity of lutionary creativity with resources, both In my LEND Program, there were 21 LEND I learned that members of lanthropy, but more often refers to entre- socio-economic and health problems that financial and technological, drives social Fellows with two trainees from Puerto Rico Congress, legislators, and policy preneurs who want to create a business exist in developing countries.” Sharpf’s innovation. In today’s unsteady economic who participated via long-distance education makers are real people. At first, I that is self-sustaining. The primary goal work has been recognized by Echoing environment, solid leadership skills sup- Celia Bertuzzi and fellow LEND trainees on Capitol Hill before technology. We were all graduate level profes- was fearful of meeting with mem- of social entrepreneurship is social good, Green (www.echoinggreen.org), which ported only by philanthropy may not be their meeting with legislative assistants. sionals, representing many disciplines includ- bers of Congress or legislators, but but business profits are often part of the honored her as one of its Fellows for 2008 enough. A sustainable income source can ing assistive technology, family specialists, was reminded that, we, the peo- equation. in the area of health and community be built into social ventures to create self- speech pathology, psychology, psychiatry, ple/advocates, are the ones with meaningful can be accomplished as interdisciplinary col- Panel member and HAP alumna Jane development. She is also the inaugural supporting initiatives. nursing, health advocacy, social work, special power. I learned that legislators enjoy meet- laboration moves forward through research Nyce, Executive Director of Staying Put in recipient of the 2009 Harvard Business Cipora Moskowitz is a graduate student in the education, and occupational and physical ing with their constituents and really want to and education, and LEND prepared me to New Canaan, described her organization as School’s Social Entrepreneurship Health Advocacy Program. therapy. The LEND curricula focused on an hear our views, concerns and life stories. I take the next step. providing social services to “keep you safe Fellowship, which noted that “SHE is a overview of Neurodevelopmental Disabilities, felt I had so many stories to share that could My LEND training gave me the confi- and confident in your home as you age.” platform for starting businesses that use Interdisciplinary Leadership Seminar and make an impact — I only wished I had dence to start my own program in the NICU An aging-in-place initiative akin in many innovative, market-based approaches to Seminar in Evidence-Based Methods. Courses more time. at Montefiore Medical Center. It is called respects to the Beacon Hill model, Staying tackle socio-economic and public health were taught by staff members who are leaders I witnessed the strength of a group with NICU PEP, A Program Empowering Put in New Canaan uses a blend of mem- problems in developing countries.” in their field. one voice discussing key public policy issues Parents. It is well documented that parents bership fees and state and federal support Her involvement began when she vol- that have great impact, such as the who have infants in a neonatal intensive “...we, the people/advocates, are the to provide services for older town resi- unteered as a coach of a girl’s soccer team Developmental Disabilities Act, Health Care care unit experience enormous amounts of dents, ranging from transportation to a in Rwanda. She found that often she did ones with meaningful power.” and Long Term Services Reform and stress and anxiety. Parents feel over- medical appointment to home maintenance not have enough players to comprise a Employment and Housing issues. I will whelmed by the experience and feel unpre- referrals to tickets to a Broadway show. team for a scheduled match. Sharpf was I had the opportunity to work with a team share my positive experience with families pared for discharge. Education with an Members volunteer and barter their time shocked to learn that her players did not of professionals in creating a team project who have children with special needs, in the emphasis on self-advocacy can help parents and skills with other members, helping to show up for games while they were men- entitled “Supporting Parents with Cognitive hope of empowering them as self-advocates. understand the vital role they play as pri- lower program costs and providing an struating. After surveying 500 girls, she Limitations: Practical Tools for Service Attending the Summit and listening to the mary caregivers. The objectives and goals of added social return to the volunteers. An discovered that they could not afford to Providers.” This poster presentation was pre- concerns of people living with developmen- this program are to inform parents about example of social entrepreneurship, this purchase sanitary pads. Sharpf extrapolat- sented to key leaders at the state and tal and related disabilities and their families core issues of prematurity and gain insight organization uses a business model to col- ed that these girls were also missing federal level in Albany and an abstract has helped give me practical knowledge. and knowledge about the available sup- lect annual membership fees from mem- school for significant periods of time, and been accepted for presentation at the I envision going back to the Hill in my ports and services their babies will need to bers to sustain the administrative structure that their potential for social and econom- November 2009 Disability Policy Conference future as a leader, as I am no longer fearful. I optimize their growth and development; to that manages a network of unbilled servic- ic advancement could be seriously affect- in Washington, D.C. I also presented a am honest and steadfast in my views pro- help parents understand the significance of es to seniors. ed by their school absences. In response, PowerPoint presentation, “A Call to Action: moting full inclusion of people with devel- empowerment and advocacy for their child HAP alumna Lois Steinberg, Director of she drafted a proposal to create small busi- The Need for A Disability Aware opmental and related disabilities and look as they navigate the health care system; and Westchester Programs for the Medicare nesses that would employ local women to Education/Moral Implications.” This extra forward to the next opportunity to promote to encourage parents to become active par- Rights Center, described how the organiza- manufacture and sell pads made from project was required in order to receive interdisciplinary education for health care ticipants in the Parent Empowering tion provides information and advocacy environmentally friendly and inexpensive my certificate in Children with Special Health providers and promote the unarguable need Program, fostering their confidence as they services to Medicare recipients, and high- banana fibers. This solution has several Care Needs at New York Medical College. for long-term supports and services for chil- begin to partner with health care providers. lighted the importance of synergies positive results: cheaper sanitary products I am confident that advocacy is attainable dren with developmental and related dis- between partners as a means of sustaining for the local women and girls, increased and is well within reach. As LEND fellows, abilities and families. Advocacy and policy Continued on page 11 local social services. Similarly, Sheila school attendance for female students and

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Faculty News On My Way... Continued from page 8 have access to multiple databases compiled and remain dedicated to improving the lives Using Patient Voice to Construct specifically by LEND Programs and of children and families. I am thankful for I plan to make a presentation about this pro- AUCDs under the MCHB. I also have my LEND experience, made possible by the an Emergency Medicine Clerkship gram at the National Neonatal Nurses access and have contributed to a Wiki on wonderful Dr. Karen Edwards. Conference in Phoenix in September. Moodle, which is an e-learning site for Celia Bertuzzi is a graduate student in the As a past LEND Fellow, I am part of a grantees of the HRSA/MCHB Training Constance Peterson, who teaches Models of meet these challenges must also accentuate cation, patient rights, the culture of the Health Advocacy Program. Advocacy: Theory and Practice, created an emer- the dynamic interaction between patient and workplace, power dynamics and cultural national network that provides opportuni- Program with valuable resources for fami- gency medicine clerkship program at NewYork- provider as well as acknowledge the tension sensitivity. Case-based problem-solving ties to participate in webinars, future con- lies and professionals. Presbyterian Hospital. She will be making a pres- between academic study and the actual prac- tutorials introduce students to the ethical ferences and fellowships funded by the I experienced great personal and profes- entation about the program in September at the tice of emergency medicine. and legal dilemmas which patients and Maternal and Child Health Bureau. We sional growth as a result of my participation European Society of Emergency Medicine Central to this clerkship curriculum providers encounter in the emergency set- Congress in Valencia, Spain. The following is an model is the concept that the learning expe- ting. In didactic sessions, students expand abstract of her presentation. rience should be distinguished by its atten- the scope and diversity of their knowledge tiveness to patient voice. The clerkship is by exploring the historical evolution and the hile the past few decades have designed to challenge medical students to broad social and cultural forces which shape brought significant advances in integrate the varied aspects of emergency patterns of health, medicine, disease and ill- Faculty Profile: Christobal J. Jacques Wemergency medicine, these care delivery and to explore and analyze ness. They examine the social implications advances have occurred within a health care the dynamics of illness from multiple per- of power inequities, new technology and Christobal J. Jacques, LMSW, is an HIV Prevention Specialist with the New York City Department of system comprised of complex bureaucracies spectives. The student’s active participa- scientific research. Students also acquire a Health and Mental Hygiene, Bureau of HIV AIDS Prevention and Control. He manages and coordinates which are often organized more for the ben- tion in multi-disciplinary, collaborative comprehensive understanding of legislative activities to prevent and control the epidemic of HIV/AIDS in , with a special emphasis on efit of service providers than consumers. partnerships with patients and health care and regulatory systems relevant to emer- areas with persistent health disparities. Economic incentives and legal considera- professionals serves to realistically illus- gency medicine, and learn how such sys- tions have assumed tremendous importance trate the complex range of skills required to tems affect the health care of individuals He joined the staff of the New York City Department of Health and Mental Hygiene in 1986 and has held in the delivery of emergency medicine, identify and overcome barriers and to cre- and drive institutional change. a variety of supervisory, management and leadership positions, including coordination of outreach and sometimes eroding an emphasis on patient- ate micro-systems of patient care that func- Subjective evaluation of this clerkship has prevention education to injection drug users, oversight of the HIV Anonymous Counseling and Testing centered care. Emergency medicine educa- tion with integrated attention to the macro- shown that it effectively facilitates learning Program, Director of Community Relations for the Bureau of HIV/AIDS and Governmental Co-Chair of tors are in a unique position to question systems in which they operate. and professional growth in a way which the NYC Prevention Planning Group. Prior to accepting his present position, he was Special Assistant to whether these trends best serve patient inter- Additionally, students are challenged to ensures a theory-practice dynamic and the Assistant Commissioner for the Bureau of HIV/AIDS. In that capacity, he had broad responsibilities Christobal J. Jacques ests and to move the system to a more find their own voice as future emergency affords students the opportunity to acquire for special initiatives and community relations. patient-centered focus where the delivery of medicine physicians and to acquire essen- essential patient-centered skills such as Mr. Jacques received his Masters in Social Work from the Hunter College School of Social Work, where he majored in community quality emergency care is dependent on tial knowledge about themselves by engag- empathic communication, negotiation, con- organization and minored in group work. He is a graduate of the University of North Carolina School of Public Health and Kenan- attention to patient voice and issues of ing in self-reflection and becoming com- flict resolution and collaborative problem- Flagler Business School, where he received an Emerging Leaders in Public Health Fellowship. empowerment, autonomy, access and educa- fortable with ambiguity and uncertainty. solving. tion are integral to the care itself. An emer- Applying ethnographic research tech- His involvement with HIV prevention has been the stimulus for an ongoing examination of his professional and personal vision and gency medicine curriculum designed to niques, students focus on areas of communi- his role in the various communities with whom he works. That self-reflection has helped him develop as a professional and leader by improving his knowledge base, sharpening his skills and refining his vision. Mr. Jacques will be teaching Program Design and Evaluation in the Health Advocacy Program. On the Frontline in the “War of Worlds” Over Health Care Reform

Continued from page 4 cut some of the waste, greed and subpar care we published about new developments in out of the system. We write regularly about biotech and medical research influenced than two decades of research from such key concepts as comparative effective- companys’ stock prices. In writing for Dartmouth that has shown that fully one- ness studies that will help identify the best HealthBeat, I feel like our words can have a Faculty Profile: Jennifer Buckley third of our health care dollars are squan- treatments, increasing reimbursement for similar influence on the success or failure of dered on unnecessary tests, ineffective or primary care doctors, promoting collabora- health care reform. Jennifer Buckley advocated for eleven years as a hospital patient representative at several large teach- unproven procedures, and overpriced drugs tion between physicians and hospitals and, ing hospitals, including Westchester Medical Center and Memorial Sloan-Kettering Cancer Center. Her To access the blog HealthBeat, go to and devices no better than the less costly finally, creating a public plan that can act as a role was to personalize and humanize the hospital experience by serving as a liaison among patients, www.healthbeatblog.org ones they replace. Hospitals and physicians showcase for these new measures and offer their families and staff, and to craft resolutions to problems and recommend corrective actions to make For more information about The Century compete against each other rather than col- affordable, quality care to many more hospital services more responsive to patients’ needs. She was a member of Memorial Sloan-Kettering Foundation, go to www.tcf.org laborate and, according to Mahar, “drug- Americans. Cancer Center’s Patient Education and Ethics Committees. She is a founding board member and con- makers, device makers, and insurers decide Health advocacy takes many forms and Naomi Freundlich is a graduate student in the tinues to serve on the board of The Pink Foundation, a Westchester-based organization dedicated to which products to develop based not on can be practiced at many levels, from the Health Advocacy Program. providing social programming and emotional support for young women with breast cancer. what patients need, but on what their mar- individual patient to large segments of the keters tell them will sell — and produce the population. But when it comes to helping to Jennifer received a BA in political science from Boston College and a MA in Health Advocacy from highest profits.” Sarah Lawrence in 1996. She is now the fieldwork coordinator for the Health Advocacy Program. facilitate the fundamental changes neces- Jennifer Buckley Informed by this view of the “medical- sary for health care reform, my personal industrial complex” that is the root of many form of advocacy is the written word. At of our current problems, HealthBeat advo- Business Week, where I worked for eight cates for fundamental changes that will help years as Science Editor, some of the articles

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