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FIGURING OUT THE #PATIENTPERSPECTIVE

The Puzzle and Promise of Social Media

White House Deputy Director of Health Reform Jeanne Lambrew opened the AcademyHealth National Health Policy Conference (NHPC) by emphasizing the need for health care agencies and providers to communicate more effectively with health care consumers.
That quest to find the patient perspective and translate data back to the public echoed
Charlene Wong
Photo: Hoag Levins
Charlene Wong, MD, is a Robert Wood Johnson Clinical Scholar at the University of Pennsylvania's Perelman School of Medicine and a Fellow at Penn's Leonard Davis Institute of Health Economics (LDI).
throughout the proceedings at both the Policy Conference and it sister meeting, the inaugural National Child Health Policy Conference.

In a NHPC breakout session, "What Are We Doing Wrong? Measurement's Unfulfilled Potential," panelists Christine Cassel of the National Quality Forum, the Centers for Medicare & Medicaid Services (CMS) Chief Medical Officer Patrick Conway, former Leapfrong CEO Suzanne Delbanco and Harvard's Ashish Jha discussed the need to engage patients and consumers in measuring health and healthcare quality.

Getting data to patients
Several issues emerged: identifying metrics that patients care about, collecting standardized metrics across various hospitals or healthcare providers, figuring out how to entice patients to give feedback, and finally disseminating results back to patients in a way that means something to them.

Different strategies were proposed. Conway suggested patient-reported outcomes be added to national instruments and measured more systematically. Jha, however, pointed out that more timely data is needed -- national datasets like MEPS or HCUP come out 2-3 years too late to make a real impact in many cases.

A similar topic thread laced through the "Advances in Research and Data to Inform Child Health Policy" session of the child conference. Anne Beal from the Patient Centered Outcomes Research Institute (PCORI) talked about finding data that has the "so what" factor for patients. Nora Wells highlighted the work of her organization Family Voices to bring the family perspective to improving health care programs and policies for all children and youth, especially those with
Charlene Wong
Photo: Hoag Levins
White House Deputy Director of Health Reform Jeanne Lambrew, PhD, opened the conference with a call for getting more health care data out to consumers.
special health care needs. Christina Bethell of the Oregon Health & Science University discussed the importance of messaging in a way that makes data accessible to the general public.

Social media communications
As they each made the same call for finding the patient voice or getting data back to the consumers' hands, I thought about how we've had similar discussions in the Penn Social Media and Health Innovation Lab. Social media provide platforms for users to create, share, and exchange information in virtual communities and networks. Social media are unique in that participants are the creators and consumers of content that is then discussed and modified. The platforms for social media are diverse and evolving; including Facebook, Twitter, Instagram, YouTube and Second Life. All segments of the population are becoming increasingly tethered to mobile devices and social media with the fastest growing cohort being older adults.

During the Q&A sessions of both breakout sessions, I asked if and how any of the panelists' organizations are harnessing the power of social media to capture the patient voice or to disseminate the findings of their studies. I pointed to popular sites like Yelp.com where patients are already rating hospitals and doctors. These ratings are inherently standardized across hospitals as the same platform exists nationally. As a bonus, patients' and families' Yelp comments could be qualitatively analyzed to identify areas for improvement.

Real-time data
Other social media sites have a wealth of patient-generated data just waiting to be analyzed and it's available in real-time, as opposed to waiting years for survey data to be released. Lastly, social media is a powerful platform to disseminate research findings to broad audiences -- building bridges between researchers and the front line receivers of care we provide, as Marsha Lillie-Blanton from CMS put it.

The bottom line of the responses to this question in both sessions: Social media holds much promise but we haven't
Ashish Jha
Photo: Hoag Levins
Harvard Professor of Health Policy and Management Ashish Jha believes Twitter and Yelp-like sites will ultimately be engines of patient communications.
really moved into that space yet. Ashish Jha did think that we'll be using Twitter or Yelp-like sites in the future to get information on patients and providers but also wished he knew what the next "big" platform would be to reach patients. Anne Beal highlighted PCORI's use of Twitter chats that resulted in over 3 million hits and her personal use of 3 different Twitter accounts. PCORI, however, has not yet funded any projects using social media methodology for patient-centered outcomes.

#PatientPerspective
Though capturing the patient perspective in social media holds much promise, several challenges in harnessing this data exist. How to define the right metrics across different platforms? Can we as providers and researchers adapt quickly enough as social media platforms evolve as pointed out by Jha? How do we protect patient privacy and confidentiality in the public space? These are the sorts of challenges that the Penn Social Media and Health Innovation Lab is trying to address.

It seems that AcademyHealth may also be ready to tackle or at least start discussing these challenges in a meaningful way. One of the AcademyHealth senior fellows approached me on the last day of the conference with a proposal to organize a session at next year's policy conference focused on harnessing social media for improved health and healthcare. It's a topic ripe for discussion that may lead us one step closer to figuring out the #patientperspective.

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