Moving from “What’s the Matter” to “What Matters?”

Reflection by Megan Weis

On December 11, 2014, the Robert Wood Johnson Foundation (RWJF) held the last of five Data for Health forums in Charleston, SC.  Led by advisory committee co-chairs David Ross, ScD, director of the Public Health Informatics Institute, and Ivor Horn, MD, MPH, medical director of the Center for Diversity and Health Equity at Seattle Children’s Hospital, the initiative explores how health information can better be harnessed to build healthy communities and help people lead healthier lives.  In Charleston the initiative heard from a wide range of stakeholders including local community leaders, researchers, data and informatics experts, physicians, consumers, public health professionals and other service providers on what data is important to them for promoting good health.

The South Carolina Institute of Medicine and Public Health was honored to work with the National Network of Public Health Institutes to help coordinate the Charleston event.  The Office of the National Coordinator for Health Information Technology within the US Department of Health and Human Services has participated in each of the sessions held nationwide. Joining the Charleston event to share perspectives were:

  • David Blumenthal, MD, president of The Commonwealth Fund,
  • Karen DeSalvo, acting assistant secretary for health, US Department of Health and Human Services, and
  • Ida Sim, MD, PhD, professor of medicine, University of California, and co-founder, Open mHealth

Joining the conversation during the plenary session from South Carolina were:

While one person certainly cannot absorb and hear all of the important points and comments made throughout the day, the conversations I was able to be part of were inspiring and intriguing.  Several moments have remained with me and, in my mind, highlight the importance of these conversations about data and health as we are becoming an increasingly data-rich society with ever-expanding opportunities to integrate that data in all aspects of our lives.

“What Matters?”

During the plenary session, Dr. Ivor Horn spoke about moving from asking people the question, “What’s the matter?” to asking regarding our system and data “What matters?”  We should start from a position of asking how data may illuminate the questions and issues that are important to us, rather than only focusing on a narrow, negative perspective.  What can data tell us about what is most critical holistically to improving the health and quality of life of individuals and communities?  To me, this fundamental statement of perspective was amplified throughout the day from multiple angles.

What matters?  The person.  The need for a consumer-centric perspective was eloquently stated by audience member Clifford Fulmore, who stood and spoke from the heart as a consumer in the health care system.  He asked the group to stop and think about the patient as a person, not a medical record or data source.  The patient should be empowered by this data.  The patient needs to know what to do with the information and understand what it means to him or her.  The beginning and end of our data collection and usage should keep this in mind.  At its heart are people.  As such, the protection of the privacy, consent and agency of those people should be held paramount.  I thought about how medical practices are moving towards patient-centered medical homes.  Perhaps our health database should be person-centered health databases.

What matters?  The presentation.  Bernie Mazyck, in his plenary presentation, spoke about the importance of data being packaged and shared in a usable manner.  The health of a community is critical to supporting economic development—make the data easy for those outside of the medical or public health setting to understand and apply.  I heard this echoed in a breakout session I attended.  A community member and activist wants data produced and used in conjunction with his/her community—not just collected on them but shaped and shared by those affected.

What matters?  Availability and usability.  As Lisa Wear-Ellington mentioned “mystery bills,” the entire audience chuckled.  We have mountains of medical data, and will have more and more as electronic medical records are more fully implemented throughout the healthcare system and are integrated across organizations.  But for a business or individual, calculating the cost of healthcare and making informed consumer choices is nearly impossible as comparing cost and quality of care in advance is impossible.  She called for transparency in costs for all consumers of services.

I’m sure everyone who participated has his or her own unique takeaways from the day, and that is why these events are so important to bring all of our voices together to share thoughts and perspectives, while allowing us to also learn from our colleagues and neighbors.  I know I was able to make new connections that will help me continue to broaden my knowledge and viewpoints.  I’m looking forward to seeing RWJF’s report on this series of listening sessions next year.

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