08 December 2013

Patients, Pharma, Partners

Generally speaking, I had always wanted to beat Big Pharma with a stick. I had no personal reason to feel that way. In my vast history of patient-being, I'd never had a particularly negative pharma experience—what's been prescribed has worked with no real side effects save for some fatigue and nausea here and there. Smart patients don't just swallow their pills. They research, learn the side effects and interactions ahead of time, and discuss with their doctors the impacts. Moreover these patients tend to see Big Pharma's advertising and drug reps not as sources of education but as shill. This perception has not been about which pharma company but rather it has been of all pharma companies.

Enter Jerry.

I'd heard rumor that there were pharma guys in attendance at the Partnership for Patients conference in Kansas City, MO. I was distrustful but curious, so it was between sessions that I caught Jerry's ear. Nothing about Jerry fit my pre-conceived notion of Big Pharma. He had a liberal arts degree—A LIBERAL ARTS DEGREE! And thus my curiosity got the better of me, so I joined him, his cohorts, and a small group of my fellow patients in a discussion about the clinical trials process. Jerry made introductions and explained the concept behind the Clinical Open Innovation team. How strange, this pharma group wanting to listen to patients! And indeed they did listen, not as Big Pharma (because frankly I still doubt that Big Pharma is capable of listening) but as humans. So I did something that I don't tend to do. I decided to trust, and specifically I decided to trust Jerry.

Patient advocates work in a troubled environment. We need acknowledgement and help from the very system we are trying to change. As a result, and as a result of human fallibility, patient advocates thus end up in relationships in which they are bought or simply used. At least those advocates who are bought, receive compensation for their work, while those who are used fall prey to flattery: I respect your opinion, now hawk my product. I recently had such an experience in which an app developer with an extensive Ivy League education continually asked me to "spread the word" about his app. I asked him to delineate exactly what he meant by "spread the word," as my time increasingly was limited and I was being forced to choose among projects that would or would not have a clear benefit for me. I asserted my worth—as an advocate, as a patient, as a person—and he suddenly stopped interacting with me.

However, Jerry always has been respectful of my time and energy. In the year that followed after meeting Jerry, he continued to reach out, and each interaction bore his continuity of authenticity. He went out of his way to maintain contact and ensure that my voice was being heard. We didn't talk Eli Lilly. We talked patients. My trust never was disappointed, instead it continued to grow as Jerry bought in to my own mission with Medicine X—a conference about medicine and emerging technologies held at Stanford University—and recruited company employees to attend what I billed as the most transformative medical conference in existence. It was a joy to plunder through MedX's Flickr stream from the IDEO Design Challenge to find a picture of Jerry in a wig, acting a part in a skit demonstrating the patient-centered solution to a patient-generated problem his team had helped devise. He was not only in, he was all in, so as plans developed to bring patients to Eli Lilly's headquarters, I too was all in.

Though my opinion of Eli Lilly had shifted, I was nonetheless keenly aware of my role in infiltrating the belly of the beast as I pushed through the revolving glass door at the company's headquarters in Indianapolis. Company headquarters say so much about corporate values. Instead of shiny black marble and self-congratulatory monuments, natural light, real plants, straight lines, and colorful but natural tones characterized the building. We convened in a perfectly normal room—no pomp, no excess, no board room tables or over-stuffed office chairs—and as comfortable as it all seemed, it continued to be. There were three times as many Eli Lilly employees as patients, an indication not of our exclusion but of the perceived value of our inclusion. In making their introductions, company employees shared more than a name and a title. They shared of themselves, and then they too, as Jerry had done time and time again, listened, and they asked questions, and they listened some more. What’s more is that through some miracle of persistence and possible soul selling to the corporate legal department, we patients were allowed to share our experience in real time via Twitter such that even more people were drawn into the conversation about how to make clinical trials more patient-friendly.

On one hand, I don’t know what we achieved. We didn’t solve the world’s problems when it comes to getting more patients involved in research and making research findings more open and accessible to the public. However, according to a blog post from Eli Lilly’s Clinical Open Innovation team—a post Jerry authored—there will be more workshops like the one I attended, workshops that rely on collaboration to improve the process.

Too many relationships within healthcare are adversarial. By classifying friends and enemies, we add bricks to the very silos we are attempting to break down. While it is inevitable that our goals will not always align, we must open ourselves to conversations that discover likenesses while exploring ways to resolve our differences.

Author's note: Gerald J. Matczak 54, Indianapolis, passed away Feb. 2, 2017. He was a Clinical Innovation Lead Consultant at Eli Lilly & Co. He was a member of Traders Point Christian Church and the Indianapolis Ambassadors. His father Gerald J. Matczak and brothers Joseph S. and Daniel T. Matczak preceded him in death. Survivors include longtime companion Nancy J. Miller; his mother Donna Matczak; sister Sharon Staunton; niece Chelsea Marks, nephew Michael Kristophel and their children. Visitation will be from 4-7pm Mon. Feb 6 at Matthews Mortuary, Brownsburg, with funeral services there at 10am on Tues. Feb. 7.

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