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Why Effective Health Advocacy Is So Important Today

Sklar, David P., MD

doi: 10.1097/ACM.0000000000001338
From the Editor

Editor’s Note: The opinions expressed in this editorial do not necessarily reflect the opinions of the AAMC or its members.

The upcoming elections have stimulated discussion about numerous areas of public concern—terrorism, jobs, and the economy, to name a few. Health care and the Affordable Care Act (ACA) have also consistently been among the top issues of concern for both Democrats and Republicans and share certain characteristics with the other highly ranked areas in their ability to inspire anxiety about vulnerability and the desire for control. Everyone has experienced illness or observed its effects among friends or families and fears the suffering that can accompany illness, the costs of treating illness, and the powerlessness associated with being a patient. Those who are relatively healthy worry about the costs of insurance, out-of-pocket payments, and the value they are receiving for their payments.

Such concerns have led to often-divisive discussions about individual responsibility for health care, the role of the government in the health care system, and redistribution of wealth through taxation to pay for health care. Some people consider health and illness a personal responsibility focused on relationships between physicians and patients and believe that the individual patient should pay for health care after comparing various options and prices as one would shop for a car. Others feel that health and illness are too complex and uncertain, information too unreliable, individual decision making often impaired, and the costs too great to expect individuals to be completely responsible. They believe that the payment responsibility should be shared, either through a regulated insurance system or through public taxation and public management. These differences have divided not only patients but also health professionals, policy makers, and politicians. Compounding the philosophical differences are the financial consequences of each approach, both to the individual and to society. When public dollars finance Medicare or the National Institutes of Health (NIH), the rules and control of spending become topics of public debate.

Health professionals have participated and continue to participate in health care discussions about public programs as experts, health advocates, and stakeholders, sharing their experiences and values in the hope of influencing health policy. These discussions about public programs and health policy could intensify after the elections. Depending on the results, the ACA could be rescinded, replaced, defunded, or expanded, with significant implications for patients, health professionals, and academic health centers (AHCs). The ACA has greatly expanded health insurance, increased quality measurement, and supported innovative care models, but it has also disrupted previous insurance programs in some cases and led to increases in health care costs for some people. Funding for health research and for education are other areas that could be affected by the elections. The research funding to support the discovery of new treatments, prevention of disease, and training of future scientists all depend largely on allocations from the government. Various federal agencies—such as the NIH, the Agency for Healthcare Research and Quality, the Patient-Centered Outcomes Research Institute, and the Centers for Disease Control and Prevention—provide important support for the activity of basic and applied research and health services delivery research that contribute to an overall improvement of quality of health care. Other important current public initiatives in health also could be affected by the elections. Funding to support programs aimed at the opioid overdose epidemic has been controversial, as has been the support of prevention programs focused on the Zika virus. Other natural or man-made disasters also will likely threaten the population in the coming years and require public support for surveillance and response.

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The Importance of Health Professionals’ Engagement in Public Debates About Health Policy

As we in academic medicine consider the possible directions of health policy now and after the upcoming elections, we may want to consider what is at stake for AHCs and their faculties, students, and patients, and ask what roles health professionals might play in public debates about health care issues. These questions lead to others: How engaged and how effective are physicians and other health professionals in educating the public about these important issues and providing leadership and advocacy? What can we do to improve their effectiveness? While the journal does not endorse specific political candidates or positions, for the last two years, it has attempted to facilitate informed discussions and advocacy about important health policy topics through the New Conversations feature. A variety of experts in health policy have written New Conversations articles to address the question, “What are the present and future impacts of current health reform efforts on medical education, health care delivery, and research activities at AHCs, and what effects might such reforms have on the overall health of communities?”1

We received our first New Conversations article from former Senator Tom Daschle,2 in which he provided a vision for health reform and identified transformational forces for the health care system that included big data, greater transparency, new payment models, and emphasis on wellness and scope of practice. He concluded his article by encouraging physician “engagement in public policy debates.” Former Senator Bill Frist and Martha Presley3 followed with a discussion about end-of-life care and palliative care as part of value-based care. They advocated “a multifaceted approach, including payment reform, encouraging an open conversation among the U.S. public, and training physicians to offer the best possible care and guidance until a patient’s last breath.” These authors, and other New Conversations authors, recognized the importance of physician engagement in public debates about health policy. Yet health advocacy continues to be a challenging topic for physicians and students. Why is that? What can we in academic medicine do now to enhance the voices of physicians and other health professionals at this critical moment in our nation’s history and in the future?

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The Various Forms of Health Advocacy

Physician involvement in the development of policy and regulations related to the health of patients and communities has been widely—although not universally4—recognized as a legitimate activity known as health advocacy. Dobson et al5 have distinguished two different types of activities associated with health advocacy. The first involves advocacy for individual patients. They label this activity as agency. This could occur through assisting the patients in accessing resources, medications, social supports, or specialty consultation. The second type of health advocacy they describe as activism, which is when someone “campaigns to bring about institutional, social, economic, or political change.” This type of advocacy involves populations and communities. Both activities have in common the recognition of the impact of various social determinants, such as poverty or poor housing, on health outcomes. The agent attempts to work the system for the benefit of the patient, while the activist attempts to change the system.

Hubinette et al6 in this issue build upon the framework of Dobson et al5 by proposing that the physician health advocate should not be trying to identify and analyze social problems in isolation but instead should be a part of a team with a shared purpose, with each member having narrowly defined goals, much as a group of systems engineers might design a rocket with different members taking on different parts of the project. With this model in mind, health advocacy is not so difficult to accomplish, since each member of the team is supported by others, and his or her contribution is more likely to be effective because it is tailored to serve the common purpose.

Sustaining the energy and enthusiasm for advocacy is also the topic for Law et al7 in this issue. These authors interviewed recognized Canadian health advocates to find out more about how they sustained their enthusiasm, and found an emphasis on collective action and support. One advocate noted,

You need to work with people who have complementary strengths, and together you can accomplish much more.

Another added:

It’s a lifelong pursuit. For every gain there’s a loss, and for every victory there’s a crushing defeat. If you are in it for the long haul and you really see it as part of your calling as a member of a community, then it’s really important that you not be alone.

It is interesting that both of these current articles about advocacy are from Canada, where the Royal College of Physicians and Surgeons identified health advocacy as one of the seven competencies required of all physicians.8 Their definition of health advocacy states that

as Health Advocates, physicians contribute their expertise and influence as they work with communities or patient populations to improve health. They work with those they serve to determine and understand needs, speak on behalf of others when required, and support the mobilization of resources to effect change.

If all U.S. physicians had to meet this competency as part of their professional responsibilities, one wonders whether there might be more visibility of physician involvement during our current election cycle.

My own experience with health advocacy began several years ago in response to a problem that I could not solve in my local community. I realized that the long waiting times for patients in my institution’s emergency department were not just a local problem but existed to varying degrees across the country, and that national advocacy efforts to bring the problem to the attention of legislators offered the best hope for a solution. I worked through my specialty organization and made visits to legislators on an annual advocacy day, as many specialty groups do, and hoped that the young legislative staff members who met with me would convey the seriousness of the problem to my senators and congressmen.

I never imagined I would one day find myself on the other side of the table listening to physicians describe their concerns and make requests for help, but when I became a Robert Wood Johnson Health Policy Fellow in 2011 in the Senate Finance Committee, that was exactly what happened. The Finance Committee staff, of which I was a member, would usher the physician groups that had appointments with our committee into beautiful wood-paneled conference rooms. We listened respectfully to the physicians’ presentations, asked questions, accepted the printed materials delivered by the physicians, thanked them for coming, and explained how hard we were working to solve their problems. We usually ended the meeting with optimistic comments about the future, because we never wanted the visitors to leave feeling depressed or unsupported. Sometimes I would be assigned to write a memo about the meeting to share with other staff and had to research the issues that were raised. I had very limited time to become knowledgeable about the topic and write my memo, and I remember how I would search the Internet madly for anything relevant. Sometimes I found slides from lectures, sometimes I found unpublished theses, and I used materials that I never would have cited for a scholarly article because they were the best materials available at the time that addressed the question I had. Perhaps that is why I enjoyed the article by Meisel et al9 in this issue of Academic Medicine, which discusses the problem of disseminating research that is relevant to policy. The authors note that with the rapid proliferation of new information and innovation, social media could help educate policy makers.

However, I remember that face-to-face meetings of legislators and staff with various physician groups also include the stories and local context that published research cannot capture. What I noticed to be most effective for health advocacy was when physician groups presented problems that were well researched, offered actual patient stories, included possible solutions to the problems they presented, and focused on problems that fit into a recognized health priority framework, such as reducing unnecessary care or improving the safety of care.

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Possible Areas for Health Advocacy Today

This brings me back to our current New Conversation topic, which will be replaced by a new topic after the November elections. I recently looked back at some of the articles we have published, which are collected on our Web site at http://journals.lww.com/academicmedicine/Pages/collectiondetails.aspx?TopicalCollectionId=43. One of them, by Robertson and Lofgren,10 focuses on the uneven distribution of health care spending in the population and the importance of understanding why a very small proportion of patients are responsible for a large proportion of the spending. While their message is about better management of complex high-cost episodes of care, what I realized was that this skewing of health care costs also has an important effect on the public discussions about health care spending and the ACA that I mentioned earlier. Since most people are relatively healthy, their premiums are applied to the care of an unfortunate, small group of patients who experienced an expensive illness like lung cancer, or a motor vehicle crash, or a chronic illness like congestive health failure. When the healthy population is faced with a decision about supporting the growing expenses of health care concentrated in this small group of patients, they are naturally resistant to paying the high premiums that do not appear to accrue any benefit to themselves but consume an increasing amount of their income. It seems to me that this is an area where physicians might have an important role in explaining why current health care premiums are expensive, that we will all likely experience expensive illness at some point in our lives, and that investment in care management now could lower the costs of health care for all of the population in the future. Physicians continue to be among the most respected groups in the country, and our voices can be influential if they are value driven, informed, and based on authentic experience.

We in academic medicine are also training the members of the future health care workforce, and we have a responsibility to prepare them to succeed in the health care delivery system of the future. It is likely that changes in the delivery system will require physician leadership and a broad health advocacy role. Dharamsi et al11 and Croft et al12 make the case for including health advocacy education and experience in the curricula of undergraduate and graduate medical education so that our students and residents can be effective in leading change to improve health and health care.

The preparation of our students and residents for a career in health care requires not only preparation in health advocacy but also an understanding of the interdependence of health and health care with the policies our society creates around the various social determinants of health and the financing of the health care system. For example, if our students do not understand the causes of the opioid epidemic, they will not be able to discover how to prevent the problem and will be left with the unsatisfactory experience of caring for the patients who have overdosed and are in an intensive care unit. How much better for all if the students have the skills to be advocates for policies that reduce the availability of the drugs or the temptation to use them. As an example of how health advocacy leaders and AHCs can join forces, Antman et al13 in this issue describe how the medical school deans from all the medical schools in Massachusetts worked together with the state government and the medical society to develop educational competencies and content to prepare medical students for the safe prescribing of opioid medications.

The academic health community has a unique perspective influenced by the latest research and the newest models of education and care delivery. This perspective needs to be included in the discussions about what direction our country should take in our health care system’s evolution at this critical juncture. A strong and informed health advocacy presence in the health care discussions at the local, state, and national levels could have a critical impact on the upcoming elections and the future shape of our health care system. Gordon14 in a Commentary in this issue presents a unique example of health advocacy by describing his journey across America on a bicycle to discuss the ACA with those he encountered along the way. While we might not expect many physicians to approach health advocacy in this way, his efforts and the stories he recounts can help all of us better understand the perceptions of the ACA in our various communities and what topics might be helpful to clarify. Advocacy efforts of groups of health professionals are most likely to be effective and sustainable, particularly when combined with individual efforts like Gordon’s.

I encourage all of our community to visit the Academic Medicine Web site to review our New Conversations, published over the past two years, and also our collection of other physician advocacy articles (http://journals.lww.com/academicmedicine/pages/collectiondetails.aspx?TopicalCollectionId=29), and to use these materials in presentations to medical students and residents, faculty, and the public. As our country searches for a new direction in health care, I hope that the academic medicine community can help lead the way with effective health advocacy.

David P. Sklar, MD

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References

1. Sklar DP. New conversations about health reform and academic health centers: Introducing a new feature in Academic Medicine. Acad Med. 2015;90:1–2.
2. Daschle TA. Academic medicine in a transformational time. Acad Med. 2015;90:11–13.
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8. Sherbino J, Bonnycastle D, Côté B, et al. CanMEDS: Health Advocate. 2015.Ottawa, Ontario, Canada: Royal College of Physicians and Surgeons of Canada.
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10. Robertson TM, Lofgren RP. Where population health misses the mark: Breaking the 80/20 rule. Acad Med. 2015;90:277–278.
11. Dharamsi S, Ho A, Spadafora SM, Woollard R. The physician as health advocate: Translating the quest for social responsibility into medical education and practice. Acad Med. 2011;86:1108–1113.
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13. Antman KH, Berman HA, Flotte TR, Flier J, Dimitri DM, Bharel M. Developing core competencies for the prevention and management of prescription drug misuse: A medical education collaboration in Massachusetts. Acad Med. 2016;91:1348–1351.
14. Gordon PR. How can physicians educate patients about health care policy issues? Acad Med. 2016;91:1333–1336.
© 2016 by the Association of American Medical Colleges