Using Social Media In Clinical Trial Recruitment
UPDATE
The article has now been published. Many thanks to all of you who took the time to help me with the research.
You can view the article here.
I am doing some research for an article I am writing on using social media to support clinical trial recruitment and I’d love to hear your thoughts on this topic.
I’d particularly like to know:
- If you have found out about clinical trials via social media channels?
- Or looked for more information/reached out to someone for trial information on social media?
- What factors would encourage you to support a clinical trial (even if you are not a participant) by sharing information on it via social media?
- For those who are/were on clinical trials, did social media play a part in finding support where you are/were on the trial?
- Did you write about your trial on your blog or via Facebook updates?
- Can you share with me any best practice/good examples of clinical trial recruitment via social media
- If I use any quotes from you in my article, I will, of course, give full credit.
Looking forward to hearing from you.
Marie, I have participated in a few. Two out of Stanford, cognitive study and live skype like support group. The others were Dr Susan Love’s studies. Only one was introduced to me via the clinic the others were found and participated in via the internet (Facebook, Google, Twitter). I have written about them in my blog on various occasions. ~D
LikeLike
Thanks so much for responding to me Diane. I’d like to follow up with a few questions if that’s ok with you?
LikeLiked by 1 person
Sure no problem
LikeLike
Hi Marie. I would be happy to connect you with Barb Geiger, BSN, RN, executive vice president of clinical operations of Clinipace Worldwide. She can provide feedback on how to increase effectiveness of social media in patient recruitment from the sponsor/study management perspective (i.e., identifying a study’s core variables, quality of communication, etc.) Barb also specializes in oncology studies and drug development, something I know is a focus of your work. You might find one of her recent blog posts to be helpful – https://www.clinipace.com/increasing-the-role-of-social-media-in-patient-recruitment-worthwhile/. Please feel free to reach out if you think she might be a resource for your upcoming piece. Thank you!
LikeLike
Hi Molly, thanks for reaching out to me. This looks like a great resource! I appreciate the offer of connecting me to Barb Geiger. If I need some more information I will get in touch again.
LikeLike
Hi, Marie. Essentially, my answer to all of your questions is yes. The first clinical trial I participated in after I was diagnosed was a Phase II trial to test a new medication to treat cancer-related fatigue in people with breast cancer or prostate cancer. I had been doing a lot of research on the subject because I was suffering from horrible fatigue myself. I came upon the trial by searching the database of the National Cancer Institute in the U.S. The search tool is here: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search
Once I found a trial that fit and was close enough for me to get to, I followed the links provided and researched the cancer treatment center where it was taking place, as well as the physicians in charge of the study. I was able to make initial contact with them by email. Before, during & after my participation, I was in frequent email & phone contact with them. Also, when my participation was done, one of the physicians, Dr. Kamath, performed a complete clinical fatigue assessment & made recommendations for treatment to my primary care physician, including phone & fax contact with him, so he could follow up. I’ve continued to stay in touch with Dr. K from time to time. I wrote about the study in this post: http://accidentalamazon.com/blog//?p=2949 It was a really good experience overall, and I learned a lot. Dr. Kamath will forever have a special place in my heart.
Since then, I’ve also participated in a number of survey studies through Dr. Susan Love’s Army of Women. Good experiences all around. I’ve also conducted clinical research myself, as a physical therapy grad student, so of course I very much support and encourage people who want to participate in clinical trials. xoxo, Kathi
LikeLike
Thanks so much Kathi – this is great!
LikeLike
Would be intrigued to read the final outcome of your research here! I’ve just started a PhD specifically looking at trial recruitment, hoping ultimately to complete my own research on how recruitment is improve (or indeed not!) through use of business and marketing methods. Please do keep me in the loop.
LikeLike
Glad we connected Heidi. Marie
LikeLike
I participated in the following trial: NCIC CTG MAC.15 (SWOG S1007) — A Phase III Randomized Clinical Trial of Standard Adjuvant Endocrine Therapy +/- Chemotherapy in Patients with 1-3 Positive Nodes, Hormone Receptor-Positive and HER2-Negative Breast Cancer with Recurrence Score (RS) of 25 or Less and would be happy to answer your questions via email.
LikeLike
Appreciate you taking the time to respond.
LikeLike
Thanks for contacting me on this. I’ll send an email your way.
LikeLike
I follow a number of medical organisations, news and research tweeters. If I see information about trials that fit with my interest areas then I retweet. In the past I’ve also posted trial lists with explanations on my blog. As I’m in remission now I blog rarely. I believe people are more reliant on social media to keep them informed. (I galso encourage people to make social media work for them by following those whose tweets you really want to read. More efficient and miss less of what is important.)
LikeLike
Jeisea this is very helpful. Thank you so much for sharing your thoughts on this topic
LikeLike
We’ve partnered to build a true crowdsourced solutions company for clinical trials – providing a platform on which our 100,000 social media influencer members can become CROs. Check out http://cureclick.com/
LikeLike
I refer to CureClick prominently in the article. Take a look http://www.powerfulpatients.org/2015/08/20/clinical-trials-2-0-reinventing-research-for-the-social-age/
LikeLike