Crowdsourcing Clinical Trials

The notion that too many people involved in a project can ruin it is quite common.

Steve Jobs and Apple showed us that a singular vision for the way something should be can create amazing, beautiful and revolutionary things. But is it always true? Some clinical trial experts don’t think so—and are working to prove otherwise.

For decades research studies were mainly designed by small groups of 10 or fewer medical professionals. Once they created the parameters and protocols only then were patients and caregivers enlisted to provide the data. This has started to shift as experts better appreciate the in-depth day-to-day knowledge of those living with conditions and see the importance of having their input earlier in the clinical trial design process.

A similar change is underway with the use of the Internet. While researchers have collaborated online for nearly two decades it’s only recently that they’re using the Web to connect with patients. Thanks to the use of crowdsourcing, many people are working together offering ideas, content and even funding to help design the best clinical trials possible.

Crucial to this new way of thinking and doing things is Protocol Builder, a proprietary clinical trial crowdsourcing tool from Transparency Life Sciences, the first clinical-stage drug development company based on open innovation. Rather than looking for other like-minded experts, Protocol Builder hopes to encourage structured input from skeptics as well as ideas the original designers might not have considered.1,2, 2a

Feedback is solicited on topics like the study’s scientific rationale, inclusion and exclusion criteria and alternative endpoints from a wide range of experts in other areas besides just the trial subject. Patients and advocates are also encouraged to submit information about what questions are most important to them. This creation and exchange has not only led to new and important ways of looking at clinical trials but also hopefully more speedy success with faster trial development and more patients knowing about them and being interested in participating.1

Crowdsourcing is a way of obtaining information, input or funding for a project or task from a large number of people, typically through the internet or social media.

Crowdsourcing has proven particularly helpful in the study of Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease. Because of its fast moving nature, estimating its progression is an important part of making sure the patient gets the best care and decisions are made at the correct time.3,4

Through a crowdsourced competition, 37 groups from around the world—many with no ALS experience —created tools to better predict how the disease would develop which in turn could make it easier to test new medications and their impact. Crowdsourcing brought in new ideas and different perspectives as well as providing a clear assessment of the solutions’ strengths through its design of blinded side-by-side comparisons of competing methods.3,4

Another interesting company is FasterCures, a center of the Milken Institute working to speed up the medical research process by encouraging collaboration, innovation and efficiency.4a

While these are several very specific examples of crowdsourcing’s success, many people believe there are more general benefits as well.

While researchers have the most hands-on, in-depth knowledge, they aren’t the only ones with good ideas. Many healthcare professionals on the front lines of patient care see interesting areas of potential study, but lack the time, resources, and knowledge to write the detailed protocols necessary to conduct clinical trials. The Alliance for Clinical Trials in Oncology is working to change this by offering a place online for people to submit a concept for possible further study.5,6

Another fascinating option would involve researchers being able to post details of their proposed trials online seeking comments from other experts, caregivers and patients. By putting heads together in advance, there may be fewer revisions later.5

Finally, more online information, whether it’s sharing favorites, casting votes or making suggestions, can’t hurt and it can help patients become more aware of, more knowledgeable about and hopefully more interested in participating. This would be huge given that only about 3 percent of U.S. cancer patients enroll in research studies.5

Ultimately, while some might believe more opinions equals more confusion and some must lead while others follow, clinical trial researchers are betting on a different outcome—that more ideas will equal more insight, inspiration and breakthroughs.

Reviewed and amended on September 22, 2015










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Thank you for putting this exchange together! It is a good strategy and will be very beneficial to both patients and researchers. Great article above and thank you for sharing these links to other organizations supporting collaborations between patients and researchers.

By on 10 June 2015 09:13 AM

Although quite promising approach a new bottleneck has been generated as a proprietary clinical trial crowdsourcing tool is required. Nowadays one definetly would like to use open source software for such approaches. Modern business models can definetly been set up this way.

By Moeckvo1 on 10 June 2015 03:43 AM

Good article

By crisitan perez on 22 May 2015 03:51 AM

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