Participatory Medicine and the Patient Leader: An Interview With Danny Sands, MD

As patients and caregivers, we often look to our doctors and other healthcare practitioners for the answers to our health problems. But what if we told you that to manage your health effectively, you needed to participate actively?

Participatory medicine is a movement in which patients and healthcare professionals actively collaborate and encourage one another as full partners in healthcare. Working together has been shown to improve health outcomes, give patients (and HCPs!) greater satisfaction, and even lower healthcare costs.

The Society for Participatory Medicine (SPM), a key collaborator in the Patient Leader Certification program, is the leading organization on participatory medicine. Because they are unmatched in their ability to effectively bring together the patient and HCP voices in a credible and impactful way, they are an organization that Patient Leaders should know and learn from. Learn more from co-founder Danny Sands about this movement and how you can play an integral part.

To learn more about rules and regulations related to patient leadership, take the Health Union Patient Leader Certification program on the Social Health Network platform.

Social Health Network: Tell us how the Society for Participatory Medicine started.

Danny Sands: At the dawn of the 2000s, the web had democratized connecting people to information and to others. A dozen individuals who saw the potential of this technology to positively transform healthcare began meeting annually. We discussed how we were leveraging this new technology to address the intolerable problems with healthcare, including dissatisfaction, lack of engagement, paternalism, and high costs.

The group included patients, healthcare professionals, researchers, and technologists. I had pioneered the use of patient-physician email and co-developed one of the nation’s first patient portals, while others had developed online patient communities, created medical resources for patients and caregivers, experienced serious illness making use of online resources, and studied how people used the internet for health and healthcare.

We were brought together by Tom Ferguson, a visionary of the patient self-care movement who was among the first to see the tremendous potential of this new technology. He named this group the “e-Patient Scholars Working Group.”

In 2006 Tom died, but the e-Patient Scholars continued to meet and ideate. We first completed the Robert Wood Johnson-funded white paper that Tom started. Then in 2009, we agreed to try to make our vision a reality. One of our members proposed a name for the movement, “participatory medicine,” which encompassed many of our ideals. We wanted a scientific underpinning for our work, so we created the Journal of Participatory Medicine as a complement to our successful blog.

We realized that healthcare was resistant to change and would not respond to external pressures to change. We also needed healthcare insiders, including physicians, other healthcare professionals, and other stakeholders to be members of this organization, which would lead to rich dialogue. We called it The Society for Participatory Medicine to appeal to this constituency.

We remain dedicated to making healthcare more participatory and inclusive, increasing satisfaction, improving outcomes, and decreasing costs for all.

SHN: Share an example of participatory medicine. Please tell us who was involved, what actions were taken, and what the overall impact was on the patient and the HCP involved.

DS: Dave, a patient in his 50s, used our patient portal to negotiate an agenda for his upcoming overdue annual visit with me. This is something I encourage all my patients to do because it allows us to use our limited time together more efficiently, addressing a prioritized blend of the patient’s agenda and mine.

One of Dave’s complaints was shoulder pain. When he was in the office I felt that he likely had a rotator cuff issue and referred him to a shoulder specialist. A couple of weeks later I was contacted by the orthopedist, who agreed that he had a rotator cuff strain, but said the X-ray showed something unexpected: a mass in his lung.

I contacted Dave and we discussed the findings. I ordered a CT scan to gather more information. I wanted him to schedule an appointment to discuss the results, but he lived far from my office and wanted to discuss it on the phone, so I agreed.

The CT scan showed multiple masses in the lungs. At this point, it was a concern for cancer and he would need additional testing. I urged Dave to track his health information online through our portal, to look up information online, and to send me messages through the portal whenever he had a question.

After we found that he had metastatic kidney cancer he learned through a (reliable) cancer information site that his median survival was 24 weeks, which was quite upsetting to Dave and his wife (and me). In addition to referring Dave to an oncologist, I also referred him to an online patient community specific to his condition.

Through that community, he learned from other patients with this cancer (and some healthcare professionals!) that the survival statistics did not reflect newer treatments available in a rapidly evolving field. Members of the community also recommended cutting-edge cancer programs and specific treatments he should pursue (and what he should not pursue). As he underwent treatment, the community was able to advise him on what side effects to expect, which enabled him to be treated with higher doses than most are able to tolerate.

Dave’s cancer responded to the treatment and he remains alive more than a decade after his deadly diagnosis. He credits our collaboration with saving his life. We have similarly partnered in managing other (less fatal) conditions he has faced over the years.

What do you think made that situation go well?

Dave and I always viewed managing his health as a collaboration between the two of us. We communicated openly and honestly. I encouraged him to view his medical record online and did not keep anything from him, but remained available to help him understand what he was reading.

Dave, for his part, was sensitive to my limitations of time and knowledge, as well as the limitations of medical science. I made it clear that neither his cancer team nor I knew everything, which is why I recommended he seek the input of a robust online community. Both of us recognized that this information was complementary to other information and that he should always consider the source. And every step of the way, we negotiated both the channel of our communication and the agenda.

By the way, Dave (now widely known as e-Patient Dave) became one of the founders of the SPM. We have collaborated on this and many other projects over the years, including a book called Let Patients Help.

What role do you feel Patient Leaders play in participatory medicine

Participatory Medicine is a model of healthcare that can lead to better outcomes, greater satisfaction, and reduce cost. As patients, Patient Leaders can both attain better care for themselves and serve as exemplars of how to collaborate with healthcare professionals to optimize healthcare interactions.

What is your “call to action” for those in the Patient Leader Certification Program?

Our healthcare system does not work for everyone. Too often it leads to frustration, conflict, and lack of trust. By understanding the principles in the Patient Leader Certification, Patient Leaders can lead the way in healthcare transformation and help promote a more collaborative and effective healthcare system.