Partnerships in Clinical Trials – speaking

I was invited to speak at the conference on Tuesday 1 April. I was on a panel called “Partnering with Patients: What do you need from each other?” The description to the talk asked, “When it comes to engagement in clinical trials, are pharmaceutical executives getting it right or are we leaving a huge amount of resources on the table? Patients and pharmaceutical executives come together to have a candid conversation on what they need from each other to push the clinical trials industry forward.”

I was expecting a cozier talk but was flattered to be scheduled on a panel that everyone at the conference attended. I was on a panel moderated by Roni Zeiger formerly of Google Health and currently in his own project, Smart Patients. I was with Jeff Kasher from Eli Lilly, Jeremy Gilbert from PatientsLikeMe, Jack Whelan a patient activist and provocateur, and Steven Mikita of the Spinal Muscular Atrophy Foundation and office of the Utah Attorney General. We were short on time and – no fault of the moderator or other panelists – I felt like the desire at the time was think about industry granting more to patients, and not patients granting more to industry and subsequently guiding the future of the industry. In my fantasy patients are the future and industry will be greatly compromised before it gets stronger, but I did not say this.

For my own part, I said that it has come to pass that Wikipedia has become the world’s most consulted source of health information, and because of this, those in the pharmaceutical industry have an obligation to acknowledge and respond to Wikipedia if they have any duty to provide health information to the public. I thought a lot about what I wanted to say and made sure that this was what I said, not because I thought that this audience would understand immediately, but because I hoped that they would remember that I said it when they hear it again from a native speaker from their own domain.

The follow up conversations I had after giving this talk were extremely encouraging and validating, even from people who were kind enough to challenge me in ways I could not answer. I am sure that no one there believed with me that information about the pharma industry managed outside the pharma industry would be a driving force in the future. Certainly I have struggled for years doubting my own soundness with regard to some of my positions. Still, it was a relief for me to go and be heard and take feedback of all kinds.