On October 25, 2017, the Society for Participatory Medicine held its inaugural meeting, Transforming the Culture of Care, at Boston Seaport World Trade Center. The atmosphere crackled with the passion for actionable improvement to the delivery, outcomes, experience, and perception of patient-centered care. Attendees beheld an insightfully curated agenda with case studies, small group chats, panel discussions, and experiences of trailblazing patients, care partners, and professionals. Keynote speakers delivered powerful, intriguing, and truly entertaining discussions.  These weren’t your typical buzzword-filled keynotes – no sugar-coating. The presentations and networking chatter gave voice to a paradigm shift from paternalistic medicine to informed decision–making, transparency in information access (Open Notes), and calls to action. The authenticity of each keynote speaker resonated deeply. As a witness, you felt the human connection and determination to drive the culture of participatory medicine forward.

• Dr. Tom Delbanco, Harvard Medical School and Beth Israel Deaconess Medical Center, and Liz Salmi, a person with brain cancer, both champions of Open Notes, discussed the importance of data transparency and access. They offered complementary perspectives as to the importance of the Open Notes initiative, from both a clinician’s and a patient’s perspective. The message was clear: You have a right to your data. Get it now!
• Dr. Lori Wilson provided a heartfelt inside perspective on the experiences of a surgeon turned patient with breast cancer turned compassionate care provider. She highlighted the need for empathy, respect, and listening in order to truly care for patients as well as the benefits of providing numerous channels for patients to access her personally when the need arises.
• Dr. Rushika Fernandopulle, Iora Health, lit up the room with his reinvented and refreshing primary care delivery model and practice. He underscored the importance of continuing to question the current state of affairs as well as the importance of addressing non-medical aspects of health and social determinants of health.
• Dr. Harlan Krumholz, Yale University, was introduced to the audience by Carla Berg,  who joined the meeting virtually to tell the true story of an unbelievable doctor who, by having the heart to save her heart, saved her life. There wasn’t a dry eye in the room. In a call to action, Dr. Krumholz challenged the Society for Participatory Medicine to advocate for patient empowerment and acknowledgment of the rightful ownership of medical records data.
• Sharon Brownlee, Lown Institute, closed the day with powerful perspectives on being a care partner for her father, diagnosed with a meningioma. She highlighted the importance of doctors acknowledging the patient’s plight and the spirit of the patient.

Panels provided thought-provoking discussions for attendees, ranging from transparency and data access, patient experience and engagement, shared decision-making, and the importance of design thinking. Panelists were challenged with intriguing questions and perspectives from the audience. Common themes throughout the day included emphasizing the individual’s right to access their medical information, transparency, and the importance of including the patient and care partner’s expertise and insights in design, development, and treatment planning.  The resounding message of “Nothing about me, without me!” opened the discussion of compensating patients for their insights. Many organizations and companies ask patients and care partners to provide their expertise and experience on workflows, technologies, clinical trial designs, etc., potentially improving the subject to be more efficient, and theoretically, more profitable.  It was suggested that it’s time to compensate patients fairly for their knowledge-base and lived experience. It’s time to think bigger and fairer market value than a $10 gift card for coffee.  

Roundtable discussions dissected many topics and perspectives. These included patient participation in the clinical encounter, patient-clinician satisfaction, the role of care partner and family, the usefulness of patient portals, creating a participatory medical education curriculum, the role of technology in participatory medicine, imagining the dream clinical encounter, and the role of the patient voice in publications. Discussions noted and collected will serve as the basis of a number of internal advocacy efforts. Let’s keep the conversation going on Connect!

Our inaugural meeting was certified as Patients Included, a designation given to an event that meets all 5 of the Patients Included charter:
Missed the event and couldn’t catch the live-stream? Loved the meeting so much you wish you could experience it all over again? We’ve got you covered! Here are speakers’ presentations from the inaugural Society for Participatory Medicine conference. Looking forward to our second annual meeting in 2018! Stay tuned for details.