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Designing outcomes that matter to patients

Tuesday, August 1, 2017

Even as the pharmaceutical industry shifts to a more patient-centric model for clinical trials, many enthusiastic R&D teams struggle to get started. How can you engage real patients to improve clinical trial design and drive better results?

Engage patients early in the process. Expand initial goal-setting to include a broader range of clinical trial endpoints. Traditionally, drug development has centered on the most critical and obvious symptom of a disease. For example, a new hemophilia drug is exclusively focused on clotting life-threatening bleeds. But when asked, “Which symptoms have the biggest impact on your daily life?” the same number of MyHemophiliaTeam members (65%) replied “depression” as answered “bleeds.” Surveying patients and designing your trial to address such endpoints could lead to a label that stands out from other therapies.

Connect with patients where they are. People diagnosed with a chronic condition such as Crohn’s often share more with fellow patients than they do with their own physicians. You’ll learn more by transparently engaging them through their patient communities than you will by pulling them into an R&D environment. Their Facebook friends don’t understand their disease, but patient social networks allow them to talk about every aspect of their disease with others who “get it.” Most communities have well-defined, IRB-approved processes for de-identifying personal data, analyzing it and collaborating to make sure patient priorities and needs are heard and actionable.

Expand the library of validated PROs. Many researchers fall into the trap of only using previously validated survey instruments in their research. The vicious cycle here is that most validated instruments were not created with patient input. By continuously incorporating patient-prioritized outcomes and endpoints into your clinical trials—and proving their importance in your results—you will advance the field and build upon the library of validated outcomes that matter to real patients. 

Start now. No matter where you are in the R&D process, it is a good time to engage patients.


Guest Contributor Eric Peacock, co-founder and CEO of MyHealthTeams, is passionate about empowering people facing chronic health conditions and making it easy for them to connect with and learn from others living with the same condition. Launched in 2012, MyHealthTeams serves more than 1 million members across 24 social networks that address 90% of the chronic condition population. A graduate of Stanford Business School and Harvard College, Eric lives in the Bay Area but remains a hopeless Red Sox fan.

This article was reprinted from Volume 24, Issue 08, of The CenterWatch Monthly, an industry leading publication providing hard-hitting, authoritative business and financial coverage of the clinical research space. The Action Items section features short columns  focusing on actionable or how-to advice from clinical trial professionals. To submit an Action Item, please contact editorial@centerwatch.com. Subscribe >>

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