Patients don’t much care for the way clinical trials are designed. That was one of the findings of a patient-centered survey that reinforced PatientsLikeMe’s plan to roll out a group of collaborative programs. They are designed to make it easier for pharmaceutical companies and patients to work together and develop more mutually beneficial trials.
PatientsLikeMe has been in the business of connecting patients through social networks and getting pharmaceutical companies to pay for de-identified patient data from the site. So really, this is a way to expand those efforts to a broader audience beyond its website.
The move follows a social media campaign earlier this year to encourage patients to share personal health data for the betterment of healthcare.
When Investment Rhymes with Canada
Canada has a proud history of achievement in the areas of science and technology, and the field of biomanufacturing and life sciences is no exception.
Here’s a breakdown of the collaborative tools:
- Trial Access deploys custom research programs to collect meaningful data and feedback on the design of clinical trials. It also includes a repository of patient opinions and attitudes about participating in clinical trials. When the trial protocol is sorted out, companies can run outreach and referral programs to raise awareness and recruit for their trial among PatientsLikeMe’s members, according to a company statement.
- Its Community Access program pairs researchers with PatientsLikeMe scientists and patient engagement experts to develop open, online registries for research to gain insights from patient-reported data that can be shared across the organization.
- Another product, Access Services, helps companies quickly collect and analyze real-world data to produce patient outcome research, and to assess the impact of new wearable and consumer-oriented health devices and sensors on clinical development and commercialization.
The March survey of 1,621 people revealed that patients had mixed views of clinical trials in which they participated, but most indicated they are open to participating in more. Survey findings include:
- 31 percent said they had previously been invited to learn about a clinical trial, and 62 percent of them participated in one
- For the 62 percent who participated in a trial, about one-fifth were slightly or not at all satisfied with it
- 93 percent said they’d be willing to help researchers design better trials
- 88 percent said they would like to learn more about clinical trials
- Four out of five said they would like to take part in a trial within the next 12 months
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