Social Media in Clinical Trials

The use of social media in supporting medical research is rapidly moving from experimental pilots to informed strategies. Indeed, an increasing number of companies and healthcare stakeholders are exploring how social media can support clinical trials activity, and as they do so, some interesting trends are emerging.

In this article I’ll review some lessons learned by those who are currently pioneering in this area.

Integrating online sources

According to patient recruitment company Acurian, which serves the medical research industry by recruiting suitable patients for participation in clinical trials, an increasing number of patients recruited by the company come from online sources including large health networks and social media platforms like Facebook and MySpace.

Acurian’s digital tactics include social media advertising on Facebook, and search engine marketing. The company believes that digital is currently effective for certain types of therapeutic areas – those that impact wide age ranges, rather than those that affect older adults primarily. Yet even in these areas, Acurian does not rely on digital channels alone. In a phase III trial in among patients with diabetes, for example, 46% of recruited patients were referred from digital sources, with 39% via direct mail and the remaining 15% from broadcast TV.

When comparing social media sources like Facebook with other digital marketing channels, Acurian has found that social networking sites, where users are sharing personal information, provide the most effective environment for contextual advertising based on users’ profiles. Search marketing contributes a far smaller number of patients by comparison.

Pharmaceutical companies are recruiting directly

Acurian’s experience is shared by pharmaceutical companies recruiting clinical trial patients directly using social media too. Among recent examples of pharmaceutical companies who have experimented with using social media to increase the speed of patient recruitment while lowering costs is Lilly, which has run international pilots in the areas of diabetes and head and neck cancer. The pilots made use of a range of social media channels including Facebook, Click-it-Forward, and Youtube as well as proprietary health networks, and included a thorough listening exercise to identify the most effective engagement channels. Ultimately the pilots demonstrated cost savings of over 10%, and provided insights to inform Lilly’s future social media recruitment strategies.

The most effective channels in the pilots, according to Sara James, Patient Recruitment Consultant at Lilly, were social networks – proprietary online health networks and Facebook. But as with Acurian’s experience described above, Lilly’s future patient recruitment strategy will not be exclusively digital. In future outreach programmes, says Ms James, social media tactics will be explored alongside traditional media such as print, radio and TV.

Recruiting rare disease patients

According to US hospital group Mayo Clinic, social media is especially effective at recruiting patients for its studies into rare diseases. According to Marysia Tweet, M.D, “Patients with rare diseases tend to find one another and connect because they are searching for information and support.” Mayo Clinic believes that social media and online networks could help researchers assemble large and demographically diverse patient groups more quickly and inexpensively than they can using traditional outreach methods.

PatientsLikeMe, which was established to connect together patients with rare diseases online and now has over 130,000 members covering over 1,000 conditions, has also seen the potential of its social network in supporting medical research. Its clinical trials database currently includes over 34,000 trials which may be searched by patients based on condition, gender, age and location. Last year the network established an alliance with patient recruitment company BBK to jointly offer patient recruitment and retention services to pharmaceutical companies.

Where’s this heading? The world’s first digital clinical trial

It is not only in the patient recruitment aspect of medical research that digital has potential. Last year, Pfizer launched a clinical trial programme in the US in which patient visits to a clinic were replaced by smartphone or computer interactions. The trial website provided simple information for potential trial patients to understand how they can get involved and what to expect.

Patients were invited to follow two steps to find out whether they were eligible to join the trial. The first of these was to watch a video where – presumably in an attempt to reassure patients that there were real life healthcare professionals behind the trial – the study team of healthcare professionals introduced themselves and presented their credentials before the trial process was explained in detail using a more informal, friendly animation. The second step was to answer screening questions and start the study registration process.

It’s a huge leap to attempt to replace the intimate personal engagement experience that usually takes place between a patient and their healthcare professional when a person joins a clinical trial, with a fully electronic process. The barriers that Pfizer has attempted to cross are significant.

Yet I believe in the coming years we will see the model develop, even becoming the norm. It is possible that one day in the future we will look back at this early pioneering example of digital clinical trials and consider it a little uncomfortable. But for now, I have no doubt that Pfizer’s bold and innovative move in launching the trial in this manner will prove to be a significant learning experience upon which they and others will build.

Daniel Ghinn is CEO at Creation Healthcare, a consultancy that partners with pharmaceutical and healthcare organizations to plan successful engagement with patients, doctors and other stakeholders. He can be reached by email at [email protected] or on Twitter.

This article was originally written by Daniel Ghinn and published in PharmaPhorum, here.

Photo by Esthr.

View all articles >