A Brookings Institute economics expert and a patient advocate argued with each other last week during a live Google chat. They disagreed about the voices of patients, and how much these voices should count. Their debate is just one of hundreds going on as to how and where and when to register patient feedback in health care. The two of them had spent almost a week in barbed exchanges on Twitter, but were relatively kind to each other at the live chat.
Casey Quinlan is a prominent voice in social media who goes by the handle @MightyCasey on Twitter. She is a journalist, frequent testifier at conferences and hearings, and passionate advocate for open data that patients can access. She is also a survivor of breast cancer. Quinlan is a collaborator with researchers studying how to better incorporate patients into the design of health care systems.
The discussion between Quinlan and Yaraghi was moderated by David Harlow, and sponsored by both Harlow and the Society for Participatory Medicine. You can read Harlow’s blog about it here.
The two of them might never have met, except that Yaraghi wrote on a US News and World Report blog about his view of a credibility problem for patients commenting on doctors. “Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive [italics mine],” he said. After the social media firestorm, he posted a subsequent blog softening and clarifying.
His first blog prompted Quinlan to write angrily that Yaraghi was discounting the most important people in the health care collaboration. She and dozens of others criticized Yaraghi, but one of the chief complaints that emerged from the discussion was that there aren’t many ways for patients to try to choose a health care provider. Even if Yelp reviews are flawed, they may be all that’s available to some consumers.
The gist of their Twitter tango is reflected in this exchange:
— Casey Quinlan (@MightyCasey) June 17, 2015
And then again here:
Casey also summarized the Twitter conversation on Storify.
What both Yaraghi and Quinlan eventually agreed is that patients need metrics about providers to help them evaluate and make choices.
Their debate just highlights the many parallel discussions going on about patients. You can get confused by the many different buzz words and phrases that describe these conversations. Two key hashtags to follow on Twitter are: #patientsincluded and #patientengagement. People like Quinlan belong to a group sometimes called “e-patients,” who are exquisitely savvy and well-read and share online resources with thousands of other patients via social media. Some of these patients testify at medical conferences and participate in collaborative projects trying to improve health care. Just one example, the Dartmouth Preference Lab, explores how listening to patients more carefully may improve outcomes. There is also a non-profit research institute, the Patient-Centered Outcomes Research Institute, PCORI, dedicated to finding the most effective treatments and partnering with patients to design studies that will test them.
In his writing, Yaraghi makes the point that he does not mean to question the credibility of patients, but technically wants to point out that measuring patient satisfaction (with hospitals) has not correlated meaningfully with health outcomes. “According to this JAMA Surgery article,” he wrote, “patient satisfaction is correlated with neither quality of care nor hospital safety. These studies provide additional support for my argument that online reviews are measuring something other than clinical outcomes.”
What’s clear is that patients are standing up and shouting (and testifying and lobbying and advocating) to get a bigger voice in health care reforms. What is muddy is just how that’s going to work.
Sally James is a regular contributor to HealthNewsReview.org and an active observer of, and participant in, health/medicine/science-related social media. She tweets as @jamesian.