The following blog post is by Tom Krohn. Tom is the Chief Development Officer for TrialReach and is responsible for business development including clinical trial sponsor relationships, patient advocacy groups and research institutions. He has 25 years of experience across different sectors in health including large pharma, hospital & retail pharmacy, and the developing world. Most recently, Tom led the Clinical Open Innovation team at Eli Lilly with a focus on patient engagement, open data and business transformation. Tom is passionate about serving patients from their point-of-view while building sustainable and highly effective organizations.
Everyone Has a Story
Everyone has a story. You. Me. Innovation.
About four years ago, a small group of Lilly employees started work on open innovation with a focus on improving public information to accelerate medical innovation. Barry Crist and I wrote a whitepaper that outlined a vision for clinical knowledge generation becoming participatory for all in the clinical research ecosystem, especially patients. Participatory—that is the essence of an open network. It is at the core of open innovation.
With executive sponsorship and a case for action, we took these ideas and developed an open API which launched in 2012. We put Creative Commons copyleft licensing on the API to remove the friction that is the norm of the life-science industry. Then, open innovation happened.
Photo from DrugInfoAssn Facebook page.
Two weeks ago, I was pleased to have the opportunity to attend the 50th Annual Drug Information Association (DIA) Annual Meeting. The DIA meeting brings together more than 7,000 life sciences professionals from all over the world. This year, the event celebrated its 50 year anniversary.
Like Partnerships in Clinical Trials and Disruptive Innovations in Pharma, the DIA conference, for the most part, is conducted by industry professionals for industry professionals. Its focus is primarily on drug development, regulation and research. But, in the last few years, the center of the conference, like the center of the industry, is being pulled toward incorporating more of the patient’s perspective to help improve research and drug development.
The inclusion of a keynote address by Jamie Heywood of Patients Like Me, and of The Walking Gallery, a patient empowerment movement founded by Regina Holliday, were indicators of the changing tide. It was wonderful to see that among top industry professionals, there is no longer a question of whether there’s a need to engage patients in discussions around drug development—it’s now more a question of “how.”
How do we meet patients where they are and provide the right channels for gathering feedback from patients? And what are the best ways to put the information we share about our clinical trials in the patient’s context, instead of only in the researcher context?
At Lilly COI, our intent is to transform clinical development through patient focused efforts, and explore open innovation methods to do so.
Our overall approach is multifaceted: We’re learning from patient advocates about how to use social media to connect online with patients, caregivers and communities to bring valuable insights into clinical research; we attend conferences and have hosted a workshop to drive shared learning and generate ideas; and, we’ve created public prototypes and put out the open LCOI-API to surface information about clinical trials. (Editor’s Note: In 2015, leadership of the LCOI-API was transitioned to TrialReach. You can learn more about their continuing work in innovation in clinical trial matching at TrialReach.com.) Most recently, we announced a collaboration with other pharma to develop a capability to enable patients to match to clinical trials.
We’ve also sought out opportunities to source innovative ideas to help move the industry towards a common goal of improving the patient experience. One such way has been our sponsorship and promotion of challenges.
The Latest: Patient Engagement App Challenge
In November we announced the winners for the Clinical Trial Redesign Challenge live at our Patients-at-the-Center of Clinical
Research conference. The challenge was for designers and developers to re-imagine clinical trial information in a patient-centric way, and to support patients who are considering enrolling in a study.
Continuing in our innovation work, we are excited to announce our joining with a number of partners to sponsor the Patient Engagement App Challenge. UBC, Enlight BioSciences the Partnership In Clinical Trials conference and Lilly COI are calling for innovative applications that can help patients who are in a clinical trial.