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.
Imagine for a moment you are a patient considering clinical trial participation. Or perhaps you really are considering clinical trial participation (good for you)! Either way, let’s say you want to understand more about informed consent in clinical trials. If you are like most patients today, you’ll look to a search engine for answers. So go ahead and do that. Head to your favorite search engine and type “informed consent clinical trials.” I’ll wait right here for you to return.
What did you find in the search results?
Here is what we noticed. First, patients have to filter through a lot of information to find what they need. They might find regulatory documents intended for research professionals mixed in with introductory content about informed consent. Second, the introductory content available is primarily static text. This static text is helpful, but it’s not as rich or engaging as it would be if accompanied by visual or interactive media. In short, it’s not easy for patients to educate themselves about informed consent in clinical trials.
Click the image to view the interactive infographic.
Photo by Ryan McGuire from Gratisography.com
Enrolling in a clinical trial is a courageous decision. Research volunteers often take on a significant amount of inconvenience and burden in order to participate. And, unfortunately, they are rarely thanked enough for their contributions to modern medicine. The Center for Information & Study on Clinical Research Participation (CISCRP) notes that many participants report feeling “no longer valued” by research staff after the conclusion of their trial.
To help give clinical trial participants more of the recognition they deserve HealthiVibe, Partners in Research, the I’m In Campaign, the Coalition for Clinical Trials Awareness, and PhRMA have planned a series of activities to take place during Clinical Trials Awareness Week (May 4 – 8).
There are three ways you can help celebrate clinical trial participants and bring awareness to clinical research:
- Give a shout out to a clinical research hero through social media using the hashtag #iCHEER4u
- Log on to the Clinical Trial Participation Google Hangout on May 6 from 3:00 – 3:30 p.m. Eastern Time.
- Participate in the Clinical Trial Awareness Week tweet chat on May 7 from 2:00 – 3:00 p.m. Eastern Time. Use the hashtag #CTAW.
2011 Diversity Conference by Oregon Department of Transportation is licensed under CC by 2.0
Failing to recruit a diverse population of patients for clinical trials can have a negative impact on drug research. Last year, Lilly CEO John Lechleiter pointed out in a Forbes editorial that “when clinical trials are skewed toward Caucasians, researchers can miss key interactions between the drug and genes.” It’s unfortunate to think that we may be missing opportunities to create more effective treatments due to these gaps in knowledge and understanding.
National Minority Health Month and National Minority Cancer Awareness Week, observed each year in April, were created to address the issues preventing minorities from having full access to healthcare options. Among the many health-related disparities that minorities face are fewer opportunities to learn about and enroll in clinical research studies. This disparity is most pronounced in the area of cancer.