At my hospital, we are committed to offering a lot of clinical trials in the community. But it’s hard — nationally, only about 3% of patients with cancer participate in clinical trials. Even at some academic centers, it may be below 10%. With less research funding available, we need to find new ways to make it easier and cheaper to do clinical trials. There may be ways to harness crowdsourcing, or collaboration of many people online, to help for little or no financial cost.
Here are three possible ways to help:
Improve interest in trials
Research shows that better understanding of clinical trials can improve participation rates. Speedier trial accrual means we get answers to important questions in less time. So why not aggregate online resources that educate patients well? If people could share favorites, let others vote on them and make comments on suggested improvements, we could develop better resources for education both in clinic and that patients could review at home or on a smartphone.
Language or cultural barriers can also pose problems. If the content were made freeware or used a non-commercial Creative Commons license, the passionate patients, caregivers, doctors, or anyone could “remix” great content through free translation or more culturally sensitive ways to describe clinical trials.
Of course, there would have to be some monitoring for conflicts of interest from content providers, but with comments and voting you would have a way to call out any ethically questionable material.
Having crowdsourced, quality patient education materials in a patient-friendly format would be a great asset. And it wouldn’t hurt if similar crowdsourced educational tools were available to doctors as well — then maybe more of us in the community can offer more trials.
Open clinical trial development in cooperative groups
Some of the brightest minds in cancer care design clinical trials. But if draft protocols were posted online for public comment and recommendations for improvements? Patients, community doctors and nurses, administrators, and advocates all may find problems that limit the ability to offer a specific trial. Wouldn’t it be nice if we needed fewer trial revisions because amateurs can help the experts? And the more that trials had “buy-in” by listening to suggestions, the more people might be willing to offer those trials.
Give amateurs tools to build trials from scratch
As a community doctor, I don’t have experience writing protocols or the time dedicated to clinical research that I’d like to still remain active in creating new research. What if we made it easy for people to develop more research ideas than academic oncologists have time to do?
Many of the parts of clinical trials are very similar, with certain essentials. What if we had a website that allowed people to build components of a clinical trial to address a certain problem? It would require a less technical/academic user interface that could then select options, like building blocks, to put together novel concepts for trials. With those options linked to macros and other built-in content, the “layman’s” idea could be put into a rough draft of a protocol.
Then let people vote and comment on that draft protocol and leave it as an open–source free idea for any hospital or clinical trials group to buff up for appropriate implementation. But wouldn’t it be great if there were a way to let amateurs help the experts on the front end, too? It might relieve academicians of doing all the work and have a sense of what trials may be more likely to succeed with accrual. Let patients and non-academic doctors help — that’s where the numbers are for successful trials!
Those are a few of my ideas. Some cost would be involved in building the right platforms to share, but I think the rewards would be great.
What do you think we could do to use crowdsourcing for clinical trial development and accrual?