What is Patient Engagement? A Primer for Summit '14

Trust yourself. You know more than you think you do. The statement makes an effective motto for motivating people to take action. So does Dave deBronkart--also known as ePatient Dave--a health policy adviser, international keynote speaker, blogger and the best known spokesperson for patients' engagement in their own health care. Dave's own motivation to take action was a direct result of surviving stage 4 kidney cancer, an experience that eventually lead him to become co-founder and the current co-chair of the Society for Participatory Medicine. He has also appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review and the Health Leaders cover story, Patient of the Future. Dave's writings have been published in several medical journals and health care-related publications as well, and he is referenced in many articles on the subject of "letting patients help".

ePatient Dave at VITL Summit '14ePatient Dave will present a luncheon speech and afternoon workshop at VITL Summit' 14. His presentations will be thought provoking discussions about the shift in health care "from patients being mere passengers to responsible drivers of their health." (1) 

To understand patient engagement it is helpful to know what participatory medicine is. The official definition can be found on the Society for Participatory Medicine website. The short version is shifting to where patients are active partners in health care. A key question about health information technology then, is how can patients participate if they can't see what a physician sees?

Participatory medicine had its start as an "empowered medical consumer" movement in 1975 with Tom Ferguson, MD, a doctor, author and researcher. His core belief was to be responsible for yourself, and he advocated for access to tools that would help people manage their own health. Dr. Ferguson was a founder of Medical Self Care magazine, and during the 1980's he was the editor for self-care and health topics in Whole Earth Catalog.

What has changed since that era and expanded the possibilities is the Internet. It fundamentally altered the pathways through which a person with a need can connect with information and other patients. The evolution of Web 2.0--when Tim O'Reilly discovered how the Web can harness the intelligence of its users-- has been pivotal for the survival of thousands of people who were able to learn about their illnesses, and become their own health care advocates. It radically restructure how people used the Web and increased the velocity of information exponentially.

Access to health data is critical to being an engaged patient. The ability to be involved with our medical charts has become easier with companies like Epic, which uses myChart as their standard patient portal, and it has a smartphone app too. The Robert Wood Johnson Foundation funded a study called OpenNotes that allows patients to view unedited medical records. The results of their study showed that patients wanted access to their medical records. Three million patients are using OpenNotes now and it has been extended beyond primary care to specialists. The next step will give families the ability to see medical records as well.

Twenty or 30 years ago patient engagement created cognitive dissonance for physicians because they were not trained to consider patients as partners in their own care. Health care was considered so complicated that the average person could not possibly comprehend it. However spokespersons such as ePatient Dave and Regina Holliday, who do not have medical backgrounds, experienced life-threatening illness personally or through family members, and learned that successfully navigating and surviving a complicated system means being involved in their own care at a deeper level.

Thomas Goetz, editor of Wired and author of The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine had some blood work done, and his provider gave him test results that he could not understand. Goetz thought the data looked like financial reports from the '80s, so he asked his art department to it make the health data look like an investment report for easier interpretation. Patient engagement offers enormous opportunities for innovation as well, and adding value to data can take the burden off providers.

People do not have to be tech savvy to be an engaged patient. The real issue is being activated and engaged. If not, then it doesn't matter what information you have access to. In the adoption of any new technology it follows a curve, with people who are behind and ahead. The same is true of all health behaviors, but people must want the change and have it work for them. The solution is not to constrict and constrain, but to empower people, to enable and train them to find the value in their medical information.

  1. From the Society for Participatory Medicine -

Register for VITL Summit '14 at