Keywords: Patient participation, social change, patient autonomy, paternalism, Society for Participatory Medicine.
Citation: Elias P. Lightning goes to ground. J Participat Med. 2015 Apr 9; 7:e5.
Published: April 9, 2015.
Competing Interests: The author has declared that no competing interests exist.
After Lucien Engelen posted a list of 10 TED talks that change(d) health care, Paul Levy commented persuasively on his blog that TED talks have not — and will not — change health care. He argued that what patients need is not polished and inspiring speeches by the elite, but an established national organization or coalition that is able to act on behalf of patients. He finishes with this:
“During most times, it is not a single leader who brings about change: It is a coalition of many local leaders who figure out how to join hands and bring persistent pressure on the body politic. Until the patient advocates figure out a way to create that coalition, the lightning will go to ground in a manner that many of us will consider inequitable and inconsistent with the objectives of political stability and economic prosperity for all.”
Though there is much in Levy’s column to agree with, I disagree strongly with this conclusion.
He does a nice job describing some of the forces in health care that are driving increased cost without increased value. His use Daniel Palestrant’s analogy of collateral damage that occurs when the energy in lightning finds the path of least resistance as it goes to ground is a fitting segue into a discussion of how patients — and especially the most vulnerable patients — are at risk for being harmed as technology, disintermediation by direct-to-consumer health care, and the shift from payment-for-volume to payment-for-value transform the health care system. I share his fear that the savings and benefits will accrue disproportionately to institutions and the most privileged and successful, but will not “trickle down” to the weakest members of society. Democratization, he says, will increase the already problematic inequalities in care.
His concern about the negative impact of increasing inequality is well stated and justified. He is correct that technology is a tool rather than a solution, and, like any tool, it can make things better or worse depending on how it is used and who uses it. Finally, he is correct that large and well-organized coalitions can be powerful.
He loses me, however, when he says the problem is that there is no organization “…that has devoted itself to the promotion of a vibrant, widespread patient advocacy movement.”
In my view, Levy’s excellent discussion misses the target because of these three misunderstandings:
Paternalism is not eliminated by changing parents. Levy’s vision of an organized body representing patients and creating change on their behalf simply changes one form of in loco parentis for another. Paternalism will only be eliminated if we educate, empower and engage individual patients, in all their diverse settings and respectful of their varied needs. Quality and value must be defined and delivered not just at a societal level, but at the level of the individual patient. Since the goal is individual patient driven collaborative care within a patient driven healthcare system, the solution is autonomy at the individual patient level, not a transfer of responsibility from one organization to another.
Coalitions, Individuals, Chickens, and Eggs
Effective coalitions do not create empowered individuals. Levy has it backwards. Empowered individuals create effective coalitions. Some of his criticisms of the nascent patient advocacy community are accurate, but they reflect a misunderstanding of how communities of practice emerge and how they function. Yes, the patient advocacy movement is still embryonic and must grow in size. Yes, it has much to learn as it evolves. Yes, it comprises multiple heterogeneous, minimally connected, and sometimes narrowly focused groups, often born of personal experience and necessity. No, it is not tightly organized and it does not speak with one voice, or even about one issue, and this undercuts its clout in the political process. All this is quite natural and necessary. In some ways, it is a feature rather than a bug: we cannot create high-quality high-value care for individuals without first empowering individuals to advocate for themselves. Patient autonomy will not be enhanced by a national patient-advocacy group dictating what is best for patients. Only by educating and empowering individuals can we grow a culture that will insist on quality and value for individuals. In the words of Vincent van Gogh: “Great things are done by a series of smaller things brought together.”
As a culture of effectively empowered patients evolves, and the empowered patient community grows in numbers and sophistication, coalitions will arise and become effective. They will likely evolve partnerships and coalitions to more effectively pursue shared goals. However, the impact of these patient coalitions will always be contingent on the ability and willingness of individuals to advocate for themselves. The broad coalition Levy envisions can only come to pass a result of the changes he and I would like to see, not a cause of those changes.
And What About the Society for Participatory Medicine?
Levy’s claim that there is no organization dedicated to creating a broad-based, vibrant, and effective patient advocacy movement is simply wrong. We exist and are hard at work. One such organization is called The Society for Participatory Medicine (SPM), a group dedicated to helping participants (not just patients) network for communication and collaboration in order to become responsible drivers rather than just passive passengers in health care. The SPM is actively supporting patient autonomy by providing information to patients and organizations, fostering communication among a very diverse collection of stakeholders, advocating for patient autonomy in every arena it can reach, and working on tools for collaboration.
Conclusion: Change Is Happening
Patient autonomy and patient-directed care depend not on an organized coalition working from the top down, but on a widespread, vibrant, and effective patient advocacy movement working from the bottom up. Power rests not in an organization but in the autonomy and empowerment of its individual members. Slowly but surely, organizations like SPM are enabling individuals to become educated and empowered drivers of their own health care. Change is happening. Like most social change, it has started slowly but the evidence — and my experience — is that it is accelerating. I predict that the coalition Levy seeks will occur, that it will follow rather than cause change, and that the coalition’s biggest challenge will be to keep up with its membership.
In the words of Paul Wellstone: “Significant social change comes from the bottom up, from an aroused opinion that forces our ruling institutions to do the right thing.”
Copyright: © 2015 Peter Elias. 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.