How willing are CreakyJoints members with RA to participate in research? A recent report answers some questions.
Last year, in preparation for the spring 2015 launch of Arthritis Power, the first ever patient-led, patient-powered research network for rheumatologic conditions, CreakyJoints implemented a new member registration form.
The new form, which takes only minutes to complete, asks new members to respond to questions about who they are and about their willingness to participate in research. This information, which helps CreakyJoints staff to better understand who’s in our community and allows us to tailor content and opportunities that will be most interesting to you, is stored in secure servers to which only staff have access.
I am pleased to report that our data scientist has de-identified information from our new registration forms that I can now share back with you, the members of the CreakyJoints community. It is our intention to share such de-identified information for a sense of transparency and common understanding.
Here’s what we’ve learned so far:
In the first year, nearly 7,000 people completed registration. Of those respondents, just under 800 people with rheumatoid arthritis (RA) completed survey questions about their willingness to participate in research. Here’s some of what we learned:
* A majority of people (65%) had never taken part in research.
* Most people (86%) prefer to be contacted by email to learn about opportunities to participate in research.
* Most people are more inclined to participate in research that is conducted by their own doctor, by a medical school or hospital, or by a non-profit organization.
* The number one reason that people would choose not to participate in research is that it might take a lot of time.
To minimize the amount of time it takes to contribute meaningfully to research, we created a platform in Arthritis Power that requires less than 5 minutes per week. If you haven’t joined already, we invite you to check it out at www.ArthritisPower.org. If you are among the nearly 1,800 who have joined already, thank you for your participation. Watch for our new, enhanced version of the web-based and mobile app to be released early in 2016.
Click below to read the full report about CreakyJoints members with RA and their willingness to participate in research.