The increasing use of social media to recruit patients for clinical trials

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.

Previously on this blog, we have covered interesting clinical trial health apps available on the iPhone such as Clinicaltrials.gov from the NIH and Healogica, to name two.

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.

One of the other interesting developments is St. Judes Childrens Research Hospital who even have a page dedicated to their social media toolkit, which you can find here.

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 forums were just beginning.

Comments

[Tim Benjamin]

Great article.

I agree that social media has the potential to speed recruitment into trials.

However, two factors will act as a brake.

Firstly, any promotional content designed to encourage people to participate in a specific trial obviously requires prior IRB approval.

Needless to say, that leaves little room for engaging potential volunteers in conversation on Twitter, Facebook, etc.

Secondly, to use social media effectively, healthcare organisations need to create content that powerfully engages the target audience.

Too much recruitment content is either hard for non-medical people to understand - or horribly impersonal.

[Eileen O'Brien]

Sally,

I'm reading this article a little late, but it's coming at an opportune time. My colleagues at Siren were talking about a Twitter feed (http://twitter.com/localtrials). It tweets info about different clinical trials and then links people to the info.

I'm all for anything that provides information to people about clinical trials.

[MaverickNY]

Tim, thanks for you comment.

Yes, IRB approval is required for promotion of the trials, but since this is already done with more traditional methods, it's really just a matter of adding social media to the list.

Totally agree with your comments on engagement, however, I do think that it is a good start to get hospitals and other patient organisations tweeting about trials that have enrollment open. Half the battle is actually getting people aware of what is out there and increasing access.

The other thing is that engagement is really happening in the deep web, in forums and patient sites behind a username firewall rather than on Twitter etc. This is a great thing but it also is only as good as the number of patients there sharing information, which can sometimes be limited in number.

What we have going so far just scratches the surface of what could be done; we have to start somewhere so I'm hoping that the e-patient revolution will mean more patients get involved in the conversation and push organisations to improve further and meet their needs for better, more user friendly medical information in general, not just about clinical trials.

[MaverickNY]

Hi Eileen,

Yes, that source is one of many providing information on clinical trials. There are many others such as GoBalto, Goclinicaltrial, etc etc.

New ones seem to crop up every week when I search for information on new studies in Twitter!

It's a good start and better than expecting people to find heavy information more suited to HCP on clinicaltrials.gov. We have a long way to go before the information becomes more digestible in ways that our parents can understand, for example.

[joe blow]

you also need to worry about study date and AE reporting being affected