You’ve Gotta Have Heart
If you’ve ever tried to recruit for a study, you know how difficult it can be to find available participants who meet the necessary criteria required for that specific project. When it comes to studying pre-existing medical conditions, the number of available participants becomes even smaller.
So how can researchers successfully track down the participants necessary for studies, in a timely and cost effective manner? For a group of cardiologists, the answer to this question was to tap into an already existing online community.
CONNECTING WITH SURVIVORS
Earlier this year, Dr. Sharonne Hayes, M.D., an investigator at the Mayo Clinic, was approached by a SCAD (Spontaneous Coronary Artery Dissection) survivor. This traumatic, but somewhat rare, cardiac event often induces heart attacks so the condition can be fatal. The survivor wanted to know what she could do to spur additional research about the unusual, and life threatening condition. Dr. Hayes wanted to help, but faced the common obstacle of finding suitable participants for a study.
When searching for study participants, Mayo Clinic investigators typically rely on the database of patient information from the clinic. For this study, however, Hayes decided to ask the SCAD survivor to help recruit participants. The survivor, in turn, sought participants through the online support community of which she was a member. Through the online community called WomenHeart (the The National Coalition for Women with Heart Disease), researchers were able to quickly and easily recruit participants. In fact, the interest in the study exceeded the number of required participants. The excess led investigators to build a virtual registry and bio-bank of as many as 400 SCAD survivors and their relatives—something that could help physicians conduct more detailed analysis in the future.
THE POWER OF SUPPORT COMMUNITIES
The success experienced in the example above gives hope that there is value in not only facilitating these communities but leveraging them as well. WomenHeart isn’t the only online support community created for medical patients and disease survivors. This approach for securing study participants could be easily replicated through other online communities. For disease survivors, looking for answers or for researchers looking to help at risk populations, this is a great opportunity. As with many other technologies, when it comes to utilizing the power of online communities, we have just scratched the surface of what is possible.
Are you the member of a health-related online community? Would you welcome more interaction with doctors and other medical professionals via this medium? How else do you think online communities could be used to support research, education and awareness? Leave a comment below to let us know or join the discussion on Twitter.