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A Doctor's Duty to Patient Advocacy

By Emily Lu
. 2 Comment(s)

I've believed for a long time that advocacy was an incredibly important component of any plan to change the world. This argument for systematic changes in policy has come up again and again in the social entrepreneurship world - where people seek to change the system with small changes outside of the system must realize that ultimately, political changes are needed. However, this logic - which works so well for those within the social change space - does not necessarily apply to the work of a physician. Medicine is fundamentally centered on the relationship between the physician and the patient. Societal forces, like access to food, insurance and so forth, may make the course of treatment more difficult, but the triumphs of medicine are the triumphs of the doctor and patient rising above these challenges and achieving health and well-being (or as close as they can get to it) despite all the odds.

I work in health disparities research, do community service to address the social determinants of health, and still, I wholeheartedly acknowledge the primacy of the doctor-patient relationship in judging what is "good" and "bad," "important" or "irrelevant" in medicine. But even when we consider this perspective of our role as doctors, I still find myself realizing that an interest in advocacy and policy is fundamental to medicine - through the lens of public health.

Last week, I attended a leadership breakfast, advocating for better awareness, prevention, and treatment options for hepatitis patients. Much of the material was new to me, but some points still resonated through my experiences with other advocacy work and made me realize that advocacy work was public health work. The fundamental tenet of public health is that prevention for many diseases (hepatitis among them) is far less costly and far more effective than any cure would be. Yet, without advocates for hepatitis-infected individuals (who do happen to be minority populations), even the United States Preventative Task Force is liable to overlook the disease's importance and the need for screening in at-risk populations. Without that endorsement, victories in prevention - or even in surveillance work to figure out the true prevalence of the disease - would be few and far between, localized in communities with the resources and the local support to bootstrap their own programs without federal help. These local victories are admirable, but unable to be replicated across the country without federal support -- which means that diseases like hepatitis require patient and physician advocates across the country to come together and educate their congressmen and women on the critical needs and issues of this specific disease.

With the news cycle being so dominated by the debt ceiling, Amy Winehouse's death and other such errata, you can imagine how single-minded such advocates must be to push their agenda through Washington. Sitting in the audience listening to these advocates, I realized that their issues were not specific to their disease. Even if advocates must focus on their disease as somehow more worthy of Washington's attention (if at least for a moment) as compared to any other, many other diseases deserve the sort of attention that the hepatitis advocates were demanding. Without these staunch advocates, many other diseases may never even get on a single congress-person's radar, much less get a bill introduced that is in their interests.

I remembered a lecture from my health disparities course at the beginning of my first-year on how poorly sickle cell disease (a disease that primarily affects African Americans) treatment and research was funded compared to genetic diseases that predominated among Caucasians, like cystic fibrosis.* I thought about all the patients with rarer, more eccentric diseases that I have met throughout the internet -- like lupus and rheumatoid arthritis -- and how much, it seems, they have had to constantly invent their own wheels to advocate for themselves and their peers in getting the care they needed for their unique conditions.

When I become a doctor, I know that I will have the privilege of working with these patients -- doing what I can for them as their doctor, making the proper diagnoses, giving them the best and most evidence-based treatments available, helping them make informed decisions about their care and how their disease will affect their life. However, I also know that I will only be part of the equation: in treating them, I will be drawing on my medical knowledge and training, but I will also asking them to draw on their individual strengths and resources to do the extraordinary work that is needed to build better health for themselves, despite their disease and despite all the barriers that we as a society put before them. As a doctor, that is, as someone dedicated to making my patients healthy, I would be wrong to ignore how much is required on the patient-side of this to make health happen and how many societal processes upstream might prevent my patients from having the greatest chance at being healthy.

I could - and I suspect many in medicine do - claim ignorance regarding the social context that makes my patients' lives more difficult. It should be acknowledged that despite all the extra classes I may have on the social context of medicine, I am not trained to be a social worker or a policy-maker.** Nevertheless, by becoming a doctor, I took an oath to do what I could to make my patients healthy -- and to do that to the fullest extent of my abilities, I cannot ignore the political and social factors that are detrimental to their health. Therefore, I must be my patients' advocate.

*Note that I personally have never done a study of racial prevalence and research funding - this was the supposition of our guest lecturer. Either way, the fact remains that sickle cell is a very poorly studied disease that receives a deplorably low amount of research attention from the government, pharmaceutical companies, and even philanthropies.

** For this last point though, I must feign ignorance as to whether there truly is any "training" to become a policy-maker. It seems to me that as citizens in a democracy, the creation of policy is something that we should simply be engaged in regardless of our position or previous training.

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  1. Heather Shaw, MD, MPH

    Permalink
    Emily,

    Great post. If you don't already know about it, you may be interested in looking at the American College of Preventive Medicine annual meeting (http://www.preventivemedicine2012.org/) to be held in Orlando in February, 2012. It emphasizes public health, disease prevention, and health policy and has planned skills building institutes in how to be an effective policy advocate and how to effectively use the media for public health messaging. Sounds right up your alley!

    Best,
    Heather
  2. cmhmd

    Permalink
    Thanks for the post, Emily!

    Regarding your last footnote, I will say that I am currently working on a graduate certificate in health policy, and although I feel that I had self-trained for at least a decade, there is important information and technique to be gained from the formal study of policy.

    I consider myself an advocate first and foremost, but advocacy can only take you so far without some (a lot?) of fundamental knowledge about how our system, and others around the world, work and fail.

    I am finding out lots of basics about our system that I either thought I already knew, and was incorrect, or that I just didn't fully appreciate.

    So, you can do much in the way of advocacy being self taught, but I am grateful to those who work so hard to publish important policy and economic work that help us try to push for rational policies!

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