A Handbook for Patients Who Want to Change Health Care



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Summary: A new report provides inspiration and guidance for activists who want to advance their aim of health care that recognizes and welcomes the participation of all players.
Keywords: Patient activism, patient advocacy, participatory medicine.
Citation: Gruman J. A handbook for patients who want to change health care. J Participat Med. 2011 Jul 14; 3:e31.
Published: July 14, 2011.
Competing Interests: The author has declared that no competing interests exist.

We have seen the impact of patient and consumer activism on health care again and again in the past few decades. Public awareness and the treatment of breast cancer have been forever changed by the efforts of millions of patients and their loved ones who have worked to raise the visibility and priority of the disease. Ex-smokers and loved ones of smokers have worked diligently over the years to put a human face on the harms of tobacco use — and to get policies enacted and make treatments available to all. Patients Like Me offers people a completely different way to advocate for change through research collaborations planned and organized online.

Those of us who have in common the aim of making health care a more collaborative enterprise that recognizes and welcomes our participation in it are beginning to get organized: The Society of Participatory Medicine, this journal, e-Patients.net and a growing universe of bloggers and organizations represent a growing critical mass of opinion that the time is ripe.

And so this new report, Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change arrives just in time to offer us valuable advice about how more of us might begin to work together to achieve that aim.

The hard-won successes of the HIV/AIDS movement are a singular tribute to the potential of patients joining with (and sometimes in opposition to) scientists, health professionals, clinicians, government bureaucrats, Congress and successive presidents to change the meaning and treatment of what was, at the beginning, an unknown, fatal disease.

Yes, the differences between HIV/AIDS and almost any other disease or condition for which we might want to advocate are many. And yes, changing the culture of medicine across the borders of single diseases will require different strategies. But the elements of that movement — attention, knowledge and solutions, community, accountability, and leadership — are critical regardless of where we focus our energy to promote change in medicine and health care.

Let’s learn from the successes and failures of those who have gone before us. Take a look at this report!

Copyright: © 2011 Jessie Gruman. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.


2 Responses to “A Handbook for Patients Who Want to Change Health Care”

  1. It is curious to read a document about using political theater, going to decision makers, and demanding and getting a seat at the table in America, that is devoid of any reference to what went before: The women’s suffrage activists, the Black Panther Party taking shotguns to Sacramento, mental health advocates/psychiatric survivors, and people with disabilities tying themselves and their wheelchairs to the furniture in legislators’ offices.

    Another issue that few talk about is race and gender. These were young white men talking to old white men who already had seats at the table (and if you don’t believe me, look at the images in the “handbook”). Now that AIDS has become a black and brown disease, a woman’s disease, the politics, resources, etc., are radically different. The fact that these issues are nowhere to be found in this document is disappointing, to say the very least.

  2. It is indeed disappointing.

    How do you think the basic principles they identify would change if both the historical precedents and the current political / social / advocacy status were included in the authors’ presentation?


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