Keywords: Patient experience, health outcomes, participatory medicine, patient reports, feedback, patient participation.
Citation: Smith CW. Patient experience, outcomes, and participatory medicine. J Participat Med. 2013 Feb 7; 5:e5.
Published: February 7, 2013.
Competing Interests: The author has declared that no competing interests exist.

In the January 17, 2013 issue of the New England Journal of Medicine, Manary and his colleagues argue that patient reports of their health care experiences actually reflect the quality of the care they receive.[1] This runs counter to the opinions of others who believe that patient reports merely reflect, for example, a measure of the providers’ bedside manner, the amenities that accompany the visit, or the providers’ marketing expertise. Manary and his coauthors maintain that patient reported measures are strongly correlated with better outcomes and accurately assess adequacy of communication with doctors and nurses. They go on in their excellent perspective piece to comment about why there is inconsistency in reports of satisfaction/quality correlation.

But, perhaps, these and other authors are missing a much more fundamental point: optimal outcomes are impossible without patient participation, especially feedback. It also begs the question of whether the purpose of the feedback is merely to assess quality or whether it is an essential component that shapes and defines the very nature of good health care. Every encounter involves a complex mix of action and interaction, including feedback, between the patient and the provider; and, to a very great extent, whether it is a high quality encounter or not depends upon the adequacy of the feedback received and the nature of the provider’s response.

Doctor Tom Ferguson, who founded the Participatory Medicine movement, clearly believed this was true, and this conviction grew ever stronger during his later years as a patient at the University of Arkansas for Medical Sciences (UAMS), where he was being treated for myeloma. Tom frequently talked with Joe Graedon (one of my fellow Co-Editors of JOPM) about how best to provide feedback to health providers in a way that improved care. Tom developed a practice of carrying index cards, taking notes on issues that needed feedback, including names of providers who exemplified good care and those who needed remediation. He then delivered that feedback to someone who was in a position to address the problem. Tom also developed a prototype single-page feedback form that consisted of a few basic questions and a field for more detailed comments. The idea was to create a process that was quick and simple, got the key points across, and didn’t erect significant barriers for the patient completing it or the provider reading and acting on it.

Tom and I (CS) worked on this process together at UAMS, along with one of his physicians, Elias Anaissie. We then adopted the concept in all of our clinics at UAMS using an online, one-page form that has revolutionized the interaction between patients and our system, and has resulted in many examples of improved care. For instance, a recent patient noted that her doctor came across as rude and condescending. The doctor was unaware, and horrified when she was made aware, but used this feedback to address her doctor/patient interactions resulting in better (or at least more satisfactory) care for future patients. Another patient noted that her pharmacist informed her that one of her medications may be causing a side effect that was confusing to her doctor and had led to unnecessary testing and suffering. Changing the medication resolved the problem. There are many more similar examples.

This type of feedback form is certainly not unique to UAMS, but too few institutions have systematically embedded immediate feedback from patients into their process. And, truthfully, our institution is still in the early stages of what will someday be ingrained in virtually every provider-patient interaction. With respect to Press Ganey surveys, there is a 3 month delay between completion and seeing the results. Nor are the results formatted such that providers can easily respond to specific issues. We need benchmarked, trended data such as Press Ganey, but these two methods complement each other and should be used together. We believe this type of patient feedback and provider response is one of the keys to truly reforming care and providing patients with another meaningful way to participate.


  1. Manary MP, Boulding W, Staelin R, W. Glickman SW. The patient experience and health outcomes. N Engl J Med 2013; 368:201-203. Available at: http://www.nejm.org/doi/full/10.1056/NEJMp1211775. Accessed February 3, 2013.

Copyright: © 2013 Charles W. Smith. 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.