In an effort to speed up the time to market, companies have always wanted to recruit clinical trials faster. Traditional media was the starting point e.g. sending trial information to advocacy groups, advertising on television, radio, posters, bill-boards etc. Now companies are increasingly looking at how social media can channel patients into clinical trials. This is an exciting area that is outside of the reach of the current FDA debate on how social media is used for drug promotion.
Various models are now slowly emerging:
1. Communities of people with similar diseases
Clinical trial information is being provided to websites that engage participants in a disease or therapeutic area. An example of this model is Patients like Me.
Patients like me is an interesting website that allows patients in several therapeutic areas including ALS, Epilepsy, Fibromyalgia, Chronic Fatigue Syndrome, HIV, MS and Parkinson’s to share information about their treatment and learn from others. Companies can arrange for emails to be sent to potential subjects with information about ongoing clinical trials in order to generate awareness. The success of such sites is limited by the number of patients that sign up and the benefits the site offers.
2. Applications that enhance search ability
Web 2.0 applications are emerging that allow patients who are interested in clinical trials to find relevant information. One useful application using this approach is TrialX, which allows users to search for trials based on the personal health information they store in your Google Health or Microsoft Health Vault account. The limitation of this is it requires the user to initiate the search, so doesn’t raise awareness of a particular trial and of course, not everyone will be using an iPhone, particularly Moms who tend to be doing most of the health research in a family.
An interesting new website funded by the NIH, and set up by medical researchers at Vanderbilt is Research Match. The site aims to create a searchable database of those interested in participating as a volunteer in research studies, not just clinical trials. The site will be used by a consortium of research institutions that obtain NIH funding. It will be interesting to see how many people sign up for this.
3. Use of social media networking sites such as Twitter & Facebook
Major cancer hospitals such as M.D. Anderson, Roswell Park and the Mayo Clinic are leading the way in social media and all have a Twitter account, as do a few contract research organizations running clinical trials on behalf of Pharma companies such as Quintiles, Oncology CRO and others. Some are just noisy broadcast mediums such as Quintiles with little interaction, whereas others have a professional social media manager such as Lee Aase of the Mayo Clinic, who does an excellent job with communications and patient interaction. They even have Mayo Radio, and patients can tweet their questions using the hashtag #mayoradio.
Roswell Park have a nice Facebook page as do MD Anderson, which also embedded their YouTube channel with interviews with leading physicians about clinical trial data and there are many others like this that are springing up. If you are a cancer patient, then listening to leading national experts such as Dr Maurie Markman talk about ovarian cancer trial results can be very reassuring in this age of the empowered patient.
To date there is relatively limited use of these tools to generate awareness for specific clinical trials, a point also mentioned by an MD Anderson cancer center physician, Dr Anas Younes, on his lymphoma blog. His oncology colleague, Dr Naoto Ueno is also on Twitter and both interact regularly with their followers, and I have found them both to be engaging and helpful, as is Dr Jack West, an oncologist in Seattle, who runs the Grace cancer website site and blogs regularly on clinical trial data and analyses the results in a way that is most helpful for patients and caregivers alike. It is clear from following them on social media sites that they are all very committed to improved medical education and patient outcomes.
One reason for the relatively limited uptake of social media tools in the hospital setting in general could be that the users of Twitter are not the target audience or the hospital communication staff are not particularly social media savvy. It is, after all, still a relatively new medium with a seemingly bewildering array of tools at the disposal. However, many caregivers, friends or family are likely to be using social media in some shape or form, so this should not be a reason for not generating trial awareness. It would be interesting to do a social media monitoring study to look at clinical trial recruitment and it's overall effectiveness.
Other places where you can find out infomation about drugs in development and clinical trials include some really well organised patient groups. One of my favourites is the Life Raft Group, which supports patients with Gastro-intestinal stromal tumours, a form of soft tissue sarcoma. They have a website, which includes information on clinical trials, a MySpace page, and a Facebook page, while the GIST support group has a well stocked wiki that is a valuable resource for patients with this condition and also includes a nicely curated section on clinical trials and specialist physicians.
In conclusion, my thoughts are that the use of social media for clinical trial recruitment and patient engagement between patients, with health care professionals and ultimately the Pharma industry will continue to evolve, they have certainly come a long way from the 1990's when bulletin boards and online Yahoo patient fo
rums were just beginning.