The power of your data: Improving clinical trials

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Another example of the impact your data can have? Making the clinical trial experience better for patients like you. Now let’s be real, that’s no short order. So where do we even start? With you, and every new member who joins the community. Every day, members are sharing their thoughts on trials, what would make them most likely to take part, and what would turn them off. It’s an ongoing research experience, but let’s take a look at snippet of results so far: 4,718 members have taken part so far… How do you learn about clinical trials?

• 59% learned about a trial from your health team, 24% via the web.
• 24% of you said you first thought of participating in a trial without suggestion from anyone else. For those who participated in past trials, the first person to suggest that you participate in a trial was a doctor (43%) or another healthcare provider (19%).
• Those of you who took part in clinical trials decided to because of your own desire (80%).

Key takeaway: Most people are still finding out about trials through their care teams or providers, but when it comes to actually deciding to take part, it’s your own desire that motivates you.   What are your impressions of clinical trials? Side note: These results are just from those that have taken part in a trial.

• 55% of you were very or extremely satisfied, and 51% would tell other patients about the trial. Not bad, but not awesome.
• 9% considered dropping out — side effects and worsening of overall health after trial were the main reasons.
• You said the best parts of the trial were the opportunity to contribute to science and medicine (78%), and learning more about your condition (46%).
• You said that the worst parts of the trial were the chance of being given an inactive drug or placebo, experiencing negative effects and discomfort with study procedures.
• Only 38% of you recall being told about the results. Yikes!!! As you know at PatientsLikeMe, we have a give data, get data philosophy. And you can better believe we work with our partners to get on board with that philosophy, too.

Bottom line: Trial results need to get back to those that take part. Period. Thanks to all who’ve participated and put the patient perspective into improving clinical trials!     Share this post on Twitter and help spread the word.