I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
Rahlyn Gossen, in response to Peer-to-peer healthcare: Crazy, crazy, crazy, obvious (2011):
By far the biggest hurdle to clinical trials recruitment is awareness. The public is generally not aware and doctors are not informing them. Interestingly, the vast majority of patients who do participate in a clinical trial would consider doing so again.
For stats and other information on clinical trial participation, check out the Center for Information & Study on Clinical Trials Participation (CISCRP) website.
In terms of patient motivation for participation, my experience has been that these are the primary reasons:
- Altruism – People want to contribute to research and help others with a similar condition, especially when the existing treatments on the market are not satisfactory.
- Access to Healthcare – For people without insurance, clinical trials can offer an opportunity to get healthcare services at no charge. And for people with insurance, my experience is that clinical trials offer superior healthcare to what’s generally available in the system. Clinical trials participants spend much more time with clinical researchers than their normal providers, and visits are extremely thorough. Relationships are forged between patients and clinical researchers in a way that typically does not happen in a normal healthcare scenario. In addition, principal investigators are often specialists in their area, so a patient can get access to a doctor who is an expert on his/her condition. Certainly, this motivation could prompt a lengthy discussion about the state of our healthcare system, but I’ll stick to the topic at hand.
- Access to New Treatment – I find that this motivation comes into play much more when patients are not happy with treatments on the market. If patients are satisfied with what is on the market, they are less likely to seek out a clinical trial.
I could cite other motivations but I think most motivation falls into or is related to one of the 3 major groups I list above.
As for improving clinical trials participation, that’s a question everyone in the industry would like answered. My personal opinion is that the industry needs to work on long-term awareness initiatives rather than focusing completely on study-specific recruitment. And I think these long term initiatives need to provide value to patients, rather than just imploring them to join a trial. One example would be making clinical trials results publicly available and searchable.
Though we aren’t there yet, I think EHRs hold the most exciting potential for advancing patient recruitment.
(If you’re interested in this topic, check out another recent post: Access to results that matter.)
Featured image: A detail of Regina Holliday‘s painting for the National Patient Safety Foundation’s Patient Safety Congress in May 2014: “Shadowing.”
Thanks to Twitter, this post is getting lots of traffic but few comments. If you’re reading and have something to add, please do!
Here’s an article shared on Twitter just now by @Lymphomation:
Interest, attitudes, and participation in clinical trials among lymphoma patients with online access
http://ascopubs.org/doi/abs/10.1200/jco.2009.27.15_suppl.e19514
Agree with this post 100%. I will add that many patients participant without an altruistic intent (and it’s not necessary), but often later see their actions as altruistic. The central reason patients participate is because they are “still sick” and protocols define how sick they need to be as per the I/E criteria. Patients also report a very high level of satisfaction with the research experience, but also report a nearly high reluctance to talk about the experience. I believe there is an opportunity to responsibly delight patients with transparency about their participation – treatment assignment, results and even data.
Rahlyn tweeted her response so I’ll add it here as an addendum:
“My views about altruism have evolved since this 2011 comment, so here’s an update. Studies ranking altruism highly use self-reported data. During actual trial decision-making, patients seem less concerned with it. Based on my discussions with patients during their trial decision-making process, much altruism has an element of self interest. In particular, I’ve found two common self interests. 1) Dissatisfaction with available treatments 2) A genetic aspect of disease. I saw the second one a lot as a coordinator for migraine and Alzheimer’s. Participants wanted to maybe help their kids, grandkids, etc. Trial participation is a big commitment. Realistically, pure altruism is not going to be a primary motivator for most people.”
(Thanks again for the insights! Truly, this is why I love social platforms like blogs, Twitter, etc. It *is* possible to have thoughtful exchanges, learn from each other, and reach a better understanding of the issues.)