Susan Poteat presents during the PACCR workshop. (Photo by Gilles Frydman)
A few weeks ago, we had the privilege of hosting a group of ePatients, advocates and engaged industry professionals for our first Patients at the Center of Clinical Trials Workshop (PACCR). A number of Eli Lilly and Company’s drug development leaders joined the workshop to listen, learn, share initiatives and generate ideas focused on how the patient/participant experiences clinical trials and how that experience can be improved.
Though the workshop was somewhat small—30 to 40 people were present throughout the day—there was a great deal of wisdom and inspiration gained from the mashup of diverse experience and perspectives.
It’s full-on conference season; so, naturally I find myself thinking about the Disruptive Innovations to Advance Clinical Trials (DPharm) conference I attended last week, and looking forward to attending Medicine X in Palo Alto this week.
DPharm is largely an industry-focused event, attended by those who share an interest in bringing radical change to the ways that clinical trials are conducted. It is co-chaired by a set of pharma executives that includes Craig Lipset of Pfizer; Andreas Koester of Jannsen; John Orloff, MD of Novartis; and Jeff Kasher of Eli Lilly. Jeff is the sponsor of our clinical open innovation work as well as other Lilly clinical trial transformation efforts, and leads the charge for us in bringing patient centricity to clinical development. In his conference kick-off, Jeff shared perspective on how to progress innovation by saying “A brilliant idea with no uptake has no value.”
I felt privileged to participate alongside established industry leaders both this year and last.
Here are a few key takeaways from this year’s conference:
1. Pharma’s commitment to collaboration is real. As evidence, look to TransCelerate BioPharma, Inc., a non-profit consortium of 17 pharmaceutical companies who are working together to solve common problems in drug research and development. After only one year of operation, the consortium has set a number of actionable deliverables, and is poised to make a real difference in clinical trial efficiency. The intent of the consortium is to allow the industry to collaborate in common areas like site qualification and training, risk-based monitoring, coordination with regulators and leveraging data standards. TransCelerate is all about making clinical research more efficient, and improved efficiency means valuable treatments can be delivered to patients more quickly and at a lower cost.
Many of us ‘try something out’ to improve our lives, but how do we know if the changes we make are really helping us? PersonalExperiments.org allows you to use the tools of science to objectively track how well a treatment or lifestyle change is working for you. You can search a catalog of possible treatments for your condition, measure your day-to-day symptoms, evaluate the efficacy of your treatments, and connect to health-tracking devices like FitBit. You can also choose to share what you’re learning publicly to help other site users explore treatment options. It’s like conducting your own personal clinical trial!
The following blog post is by Lane Rasberry.
Lane has participated in more than 40 clinical trials as a healthy volunteer, as well as worked on the research team conducting clinical trials for the University of Washington. He’s a fan of clinical research, and has served on community advisory boards for clinical trials. He’s regular Wikipedia contributer and member of WikiProject Open Access as well as WikiProject Medicine. Lane works with various patient and research participant rights groups as well as the Open Knowledge Foundation to promote and advance science in the Seattle area. As such, Lane brings a unique, multi-dimensional perspective on clinical trials.
The opinions expressed by Lane are his own, and do not necessarily reflect those of the Lilly COI team.
I became interested in clinical trials when I moved to Seattle from rural Texas at the age of 20. I had no job skills, and no experience or real interest in clinical research.
One day I saw an ad offering the equivalent of minimum wage for my time as a participant in a clinical trial, and I took the opportunity. Soon after, I started studying chemistry in college and joined more trials. I participated in about 40 of them over a period of years.
After I graduated from the university, I took a job conducting clinical trials for one of the school’s health departments and joined a community advisory board for an organization’s clinical trials.
Through my experiences, I became a supporter of clinical research; and, I encourage other people to participate in clinical trials. I also encourage researchers to appreciate and support their trial participants.
Better Access to Information
As a research participant, what I found myself wanting most often was better information about the trial. Before starting the enrollment process, I wanted to learn more about the study, but my options for that were limited.