Twenty-five years ago, I learned I had a large liposarcoma in my left quadricep. I have written elsewhere about my surprise when my surgeon informed me that he and the team had changed the treatment plan. What team? Who are these people? Why wasn’t I at the team meeting? While I am eternally grateful that the medical team successfully addressed the problem and have given me cancer-free life since, the experience was far from participatory.

As a patient, I have always held a mental image of what the ideal experience with healthcare looks like:

• I feel heard.
• My questions are answered with respect.
• My concerns are addressed to my satisfaction.
• No surprises. Tell me the truth about the risks and the benefits.
• Outcomes meet or exceed the agreed expectations.

Like many, we rarely get to experience our imagined idea. However, I believe my conditions of satisfaction set a reasonable and achievable standard. A recent experience with Hartford Healthcare (HHC) put this belief to the test.

The experience started before COVID, when I became disillusioned by another healthcare company’s lack of participatory practices. As the pandemic ended, I made the decision to go shopping for a new primary care provider and this led me to HHC. At the first visit I had a long list of complaints and questions to get through. She listened, asked questions, and gave me useful information. In fact, she scheduled a second appointment to finish listening. I felt heard.

One of the complaints was an obvious umbilical hernia that was unsightly and uncomfortable, but did not pose any immediate danger. I was referred to a surgeon and an appointment was made for me before I left the office. The surgeon and physician assistant were a pleasant surprise, as they took time to understand my concerns and desired outcome. They knew what was important to me before ordering a CT scan. My questions were answered with respect.

The CT showed more significant injury. I had diastasis rectus abdominis, a separation of the “six-pack” normally seen in pregnant and postpartum women (and some portly men like me). The PA walked me through the key slices in the scan and explained the proposed procedure in some detail. Once again, he answered my questions and engaged in a discussion to help me raise others. Only then did he ask me to sign the informed consent form. My concerns had been addressed. 

The day of surgery brought a string of very participatory interactions. From the pre-op-nurses to the orderly who wheeled me to my room post-op, they engaged me as a person and clearly adjusted as I asked relevant questions and showed a curiosity for specifics. The anesthesiologist explained the agents to be used, the need and procedure for intubation, the risks involved, and what I might expect in the hours and days afterward. Similarly, my surgeon went through some of the expected discomfort, weakness, recovery time, and positive outcomes. No surprises; they told me the truth about risks and benefits.

One of the most participatory moments was when a different PA did a follow-up visit the day after the procedure. She had been in the OR and it was the first time she had seen a robot-assisted ventral hernia repair with component separation and mesh. She was bubbling with excitement. As I pressed for more details and mentioned that I had done small animal surgery as part of my research career, she dove right in and vividly described what happened. I learned exactly what had been done to my abdomen which allowed me to better understand 1) what to watch for, 2) how to facilitate recovery, and 3) the reasons for optimism. I told her I was glad I could provide the education and entertainment.

At the time of writing this article, I am right on schedule in my recovery. Still some swelling, sneezing is a bit scary, but I can start to be slightly more active. I can even see the hint of a six-pack again; maybe that is wishful thinking. Outcomes have definitely met or exceeded the expectations set by the surgical team and agreed to by me.

By my own standards, this is what participatory medicine could and should be all the time. However, I need to emphasize that this was not just one enlightened physician. This was the whole system. This was everybody I encountered. This was the whole experience.

But I cannot help wondering if this would be the same for everyone. As a white, educated, well-insured, curious male who asked a lot of the right questions, did I get better treatment? Was I welcomed into the circle that others may not be? I can only hope that my respectful curiosity, sense of humor, and kindness did play an active role in helping this health system fulfill the promise of participatory medicine.

Kevin W. Freiert is the CEO of Salem Oaks Consulting and the Vice President and Board Member for Rare New England. Kevin has over 35 years of experience in biopharmaceutical R&D, patient engagement, and leadership. For the past decade, much of his focus has been on serving the rare disease community.

Experience for yourself the power of participatory medicine at SPM’s Creative Learning Exchange, Advancing Health Equity Through Participatory Medicine.  Buy virtual or in-person tickets here: https://www.eventbrite.com/e/advancing-health-equity-through-participatory-medicine-tickets-594076888967?aff=ebdssbdestsearch.  Thanks!