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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.

Niam Yaraghi is an expert analyst of health care information and technology related to health care policy. He is a fellow at the Brookings Institute. His Twitter handle is @niamyaraghi.

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:

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.

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Comments (9)

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Mark Story

July 1, 2015 at 11:13 am

I was not aware of the debate, Sally, so thanks for writing this article. I have been doing social media since its inception and my first thought is that it is routine that people put things in writing that they would never say to someone face-to-face. It’s a common occurrence, especially on Twitter.
And I have no scientific data to back this up (and wonder sometimes why things that cannot be quantified are so easily dismissed), but what constitutes good “customer service” with a doctor may well also be a generational gap. Our parents’ generation would never dare question that a doctor said or advised. Doc said it, and they did it. Period. Now, more than ever, a younger generation of patients are (mainly for the better) more informed and prepared to ask the right questions after careful research. For me, good customer service from a doctor means a lot of things, but before an important visit, I always come prepared having done my homework to ask what I hope are the right questions about treatment options. And if I do not get what I perceive are the things that are important for me from a doctor (expertise, knowledge, listening skills, plenty of questions and even apologies for running late) just like a car mechanic or a plumber, I move on to the next guy. I am the patient, but I am also the paying customer.

    Sally James

    July 1, 2015 at 11:43 am

    Agree with you, Mark, that we have a lot to learn about the cultural and generational differences in how today’s patients frame their own role. I am eager to hear from social science and health policy academics if they have research on this.

David Harlow

July 1, 2015 at 1:13 pm

Sally — Thank you for sharing this discussion more broadly. I would invite interested readers to dive into the conversation: http://healthblawg.com/2015/06/patient-reviews-physicians-useful.html There is an opportunity to define more useful metrics for evaluation of health care providers, and we are crowdsourcing ideas in order to be sure that the metrics are indeed useful. So … please read my follow-up post and join the conversation.

    Sally James

    July 1, 2015 at 5:12 pm

    Thanks David for inviting people to help shape how patient feedback is measured. When you say “we” are crowdsourcing ideas, is that the Society for Participatory Medicine? Where will the result of that crowdsourcing be archived or shared?

Laura Henze Russell

July 2, 2015 at 5:10 am

The best way for patients to have impact is to vote with their feet and their wallets, and leave unhelpful or bad doctors and dentists in the rear view mirror, and find those who diagnose and treat the causes of their diseases. Patients welcome their telling others, so they can repeat their successes instead of their mistakes.

    Sally James

    July 3, 2015 at 10:42 am

    Voting with your feet, as Laura recommends is tricky when there isn’t enough information up front to make a decision. Forbes magazine published on this: http://t.co/Dtc7RwPvc7

Carol Cronin

July 6, 2015 at 7:20 am

There are beginning to be other more clinically oriented resources that patients can use to gather information about doctors, but they are still very much at the early stage. We have attempted to gather and evaluate those public reporting websites about doctors in our work at the Informed Patient Institute (www.informedpatientinstitute.org) but we have a long way to go to ave robust reporting about doctors. In the meantime, people are going to use what they can find.

    sally james

    July 6, 2015 at 11:17 am

    Yes, Carol, the Informed Patient Institute is a great resource. I am so glad you took the time to share this here.

Neeti

July 6, 2015 at 3:50 pm

Thank you writing about this, I was unaware of this formal debate. A few thoughts come to mind:
1. Most of us lay people cannot truly evaluate a surgeon’s technical skill so we often rely on reports on complication rates, mortality etc.
2. With respect to a physician’s cognitive ability, again we use surrogates such as board certification, word of mouth, years of experience etc. This choice is often unavailable as an inpatient. It can take weeks/months to figure out if there was misdiagnosis or sub optimal therapy.
3. Not all providers/hospitals have access to the latest technology (which may or may not be better) or can refer patients with limited treatment options/rare diseases to clinical trials at a referral center.
4. We must delineate metrics which can be measured such as: wait time to get an appointment, courteous staff, cleanliness of the facility, response times of providers when needed, transparency with sharing outcome data. A great example is how the CF foundation makes data on registered CF centers available to patients/families.