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.
Two weeks ago, I made my way to Philadelphia to attend the Clinical Patient Technology and Engagement Summit, hosted by CBI. At the conference, several speakers from pharmaceutical and contract research organizations presented on topics of patient-centric clinical trial recruitment, volunteer retention, clinical trial protocol design, data collection and mobile innovation.
It was a great opportunity for us to exchange ideas with others in the pharma and clinical research industry on how to use the digital space to reach out to patients, raise awareness about clinical trials, and increase the possibilities of discovering life-altering medicines.
And, it was also an opportunity for me to debut my Walking Gallery jacket, painted by Regina Holliday. Many people approached me to ask about the jacket. I was honored to be able to share my personal story with them, and talk about the how the Walking Gallery is bringing more patient-focus into healthcare. My jacket and story has a direct tie to clinical research and my work with Lilly COI – if we happen to meet, feel free to ask me about it.
Here are a few highlights from the conference:
Photo from medcitynews.com
According to a study in the Annals of Emergency Medicine, 78 percent of patients don’t understand hospital discharge instructions. Another large study of more than 2500 patients found that 42 percent misunderstood directions for taking medications on an empty stomach, 25 percent misunderstood the scheduling of their next appointment, and nearly 60 percent were unable to read and understand a typical informed consent document. (Source: Therapeutics and Clinical Risk Management)
It seems as though there is a real disconnect between what clinicians are saying to patients and what patients are hearing. So, what can be done to bridge the gap? Some healthcare professionals have begun using video to simply and clarify complex medical concepts.
Visualizing Patient Satisfaction
In a recent blog post on MedCityNews.com, Dr. Shaun Gogarty shares some of the success he has experienced when presenting medical information to patients through pictures and video. The idea came about when Dr. Gogarty, who had always prided himself on what he thought were excellent patient engagement skills, was shocked to see less than stellar results from his patient satisfaction survey:
“No one really wants to be graded by relative strangers, and I was no different, but seeing low scores for something I had tried to do well, made me think about how to do better.”
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.