The Inaugural Society for Participatory Medicine Conference: Transforming the Culture of Care

McCallum, Janice; Finn, Nancy; Ternullo, Joseph; Krug, Sarah; Sands, Danny

Introduction

The Society for Participatory Medicine (www.participatorymedicine.org) (SPM), which was founded in 2009 by a group of forward-thinking physicians, patients and researchers, held its inaugural conference, SPM2017, in October 2017 in Boston, MA.

The Conference theme: Transforming the Culture of Care, was highlighted throughout the day by an exciting roster of renowned speakers including:

Tom Delbanco, MD, Richard and Florence Koplow – James Tullis Professor of General Medicine and Primary Care at Harvard Medical School, was SPM2017’s opening keynote speaker. Dr. Delbanco spoke of the need to provide patients with access to their medical records with the rallying cry “nothing about me without me.”

Rushika Fernandopulle,  MD, CEO, Iora Health, who discussed the current payment system, based on a fee-for-service model, and how it impedes efforts to shift the balance of power between patients and clinicians

Harlan Krumholz, MD, Yale University and Director, Yale-New Haven Hospital Center for Outcomes Research, discussed some of the false assumptions that are far too common in medicine today and that perpetuate assigning a passive role to patients.

Lori Wilson, MD, Howard University Hospital and Cancer Center, who gave a gripping account of her experience as a breast cancer patient.

Shannon Brownlee, MS, Senior Vice President, Lown Institute, who closed the day with a challenge to the audience that it is time to consider mobilizing to transform the culture of health care.

Keynotes

In the opening keynote: People Power and Nervous Clinicians: The International March Toward Patient-held Research, the theme of “nothing about me without me” was repeatedly emphasized as a rallying cry for patients who have been denied access to their medical records or not properly informed or asked for consent for decisions made on their behalf.

Dr. Delbanco’s talk centered on the OpenNotes movement that he leads at Beth Israel Deaconess Medical Center in Boston. OpenNotes extends current requirements for providing patients access to core lab results and visit summaries to requiring that physician notes be made available, as well.  When first presented with this idea, many physicians recoiled at the thought of sharing their notes with patients, according to Delbanco, and they were worried about the time required to answer questions that would arise after patients read the notes. They also were worried about how medical descriptions in the notes would offend patients and how that would affect their relationship. However, in reality, he explained, patients found benefit in reading the notes, increased the trust they put in their physicians, and became better prepared for their future appointments after reading the notes. Nor did the time concerns of the physicians materialize.

Dr. Fernandopulle, whose talk, Power Dynamics and Primary Care, forcefully made the case that the current payment system, based on a fee-for-service model, will impede efforts to shift the balance of power between patients and clinicians. He suggested that many things that would benefit patients are technically feasible but are not given priority  because there is no obvious financial benefit within the current system. He gave the example of requesting that hospitals send daily notifications when Iora Health patients are in the hospital so they can coordinate care with the hospitalists. Without pressure from payers, hospitals are slow to respond to changes like this. Changing the culture of care will take time, capital and the will of patients, he said.

In Changing the Assumptions in Medicine, Dr. Harlan Krumholz challenged the audience to dispute some of the false assumptions that are far too common in medicine. Among the questionable assumptions he laid out:

 

• People expect to be told what to do
• Patients want to be shielded from information
• People expect to defer to authority.

A growing body of evidence demonstrates that when patients are given information, such as a decision aid, in advance of an appointment and decisions are made collaboratively with their clinician, patients are more likely to adhere to care plans and have a greater degree of trust in their clinicians, he said.

A Fireside Chat with Lori Wilson revealed her personal experience as a breast cancer patient. She works as an oncology surgeon, yet it wasn’t until she was on the other side of the doctor-patient relationship that she says she fully understood the added stress imposed by a paternalistic relationship. She recounted how the small considerations, such as scheduling and getting to and from appointments, add up to significant burdens and expenses that could be overwhelming, especially for single heads of households who aren’t paid for time off from work.

She also discussed her personal experience with a clinician who did not realize she was a physician and arbitrarily dismissed her when she suspected that a wound was infected and needed attention.  The physician dismissed her concerns and sent her home for the weekend. This experience, she said, helped her gain a better understanding of what it is like to be in the average patient’s shoes. Dr. Wilson’s story is chronicled in The Emperor of All Maladies: A Biography of Cancer, a book by Siddhartha Mukherjee that was turned into a PBS documentary by Ken Burns.

In her closing keynote, How Change is Impacting Care, Shannon Brownlee of the Lown Institute contended that it is time to consider mobilizing to transform the culture of health care.  She issued a challenge to the audience to become more actively involved in healthcare and join activist groups such as the Right Care Alliance which is gaining support across the nation to bring attention to the disparities and inequities in prescription drug costs and what can be done about this.

Themes from Panel Sessions

Other sessions included panels on patient experience, shared decision-making, and design thinking. All panels included a mix of clinicians, patients, researchers and innovators. Highlights from the panel sessions are recapped below.

Opportunities and Challenges in Patient Experience: What’s Next?

The patient experience panel debated critical issues related to how we measure patient satisfaction. Although the field of measuring patient experience has matured since the first HCAHPS survey was introduced, the panel debated whether researchers are asking the right questions and whether they understand how patients view their experiences while in the health care system. An example was given of a patient who was sent to have some lab tests done after his appointment in late afternoon. By the time the patient arrived at the lab, it was five minutes before closing, but the lab door was locked. The lab personnel communicated to the patient via the locked door that he would have to return the next day. This story was offered as an example of “preventable disrespect.”

Shared Decision Making

This panel debated whether the issue should be framed as “shared” decision making. Some panelists argued that the patient should be the sole decision maker with their physician/clinician team as advisors, while others asserted that it is the physician’s responsibility to make decisions with as much understanding of the patient’s goals as possible. This panel also emphasized that the patient’s ability to absorb and respond to information is affected by the environment in which the communication occurs and the patient’s circumstances. When the physician is standing over a sick patient hooked up to machines and clothed in a hospital gown, the power dynamic does not allow for shared decision making on an equal footing.

Design Thinking

The panelists discussed how design impacts usage in the context of the patient-clinician relationship and whether current efforts to promote patient access to records via patient portals has been designed in ways that will promote patient understanding of how to effectively use portals to download and analyze data. Panelist Juhan Sonin, Creative Director, Involution Studios, aptly stated that good design is system design. Patient portals should be designed to fit the patient’s needs and comfort level with technology.  He pointed out that design thinking requires planning and execution that involves the intended users as well as the internal stakeholders. Design experts factor in co-creation that recognizes that there is more than one expert and that directly collaborating with target users of a product or service early in the design process will yield better user experiences. This concept of co-creation aligns with the collaborative principles of participatory medicine.

Interactive Sessions

The conference also included a number of roundtables where all audience members participated in a discussion facilitated by a leader and providing an opportunity to explore the general theme of Transforming the Culture of Care on a number of fronts.  Among the roundtables were:

 

• • How to Move the Needle in Participatory Medicine
  • Participatory Medicine and Patient/Provider Satisfaction: What are the Benefits/Barriers?
  • Patient-Family Advisory Councils and Family and Caregivers role in Participatory Medicine
  • Patient Portals

 

Conclusions

The inaugural SPM conference gathered many of the leading voices seeking positive change in the healthcare system and included a diverse set of viewpoints, from physicians, nurses, caregivers, researchers, and patients.

Shared decision-making, engaged patients, and new forms of patient education are all concepts that are frequently discussed in the medical literature and health care communications. These tenets of participatory medicine are gaining acceptance by a growing number of patients, clinicians, provider organizations and health plans.  At a time when improving the outcomes and lowering the costs of our health care system becomes more urgent, engaged, educated and empowered patients are fundamental to transforming the culture of health care.  However, the benefits of participatory medicine are not yet sufficiently accepted across the health care system to change the culture to one in which patients are given adequate control over their health care decisions.

Tom Ferguson, MD, the visionary who coined the term e-patient and whose prescient ideas for transforming health care inspired the founding of SPM, was advocating for participatory medicine in 1980.

There is still work to be done to increase the number of engaged and empowered patients and advocates. In addition, e-patients need to be equipped with the tools they need to convince reluctant physicians and provider organizations of the benefits of participatory medicine. That is the mission of SPM, to serve as the central community that can create and share information and advocate for participatory medicine.

This article attempts to summarize the highlights of the SPM2017 conference. However,  there is no substitute for having been there in person, so we hope to see you at the SPM2018, on October 17, 2018. For anyone who is interested in  experiencing last fall’s full conference virtually, videos of each session are available online at: https://participatorymedicine.org/conference/spm-2017-conference-videos/.

Acknowledgements

The Society for Participatory Medicine would like to thank the generous support for #SPM2017 from the American College of Radiology, EBSCO Health, Involution Studios, HealthSparq, Open Notes, Northwestern School of Communication, Pulse Infoframe, and WEGO Health. The conference was also made possible with the help of the Personal Connected Health Alliance.