We’ve written before about the perennial problem with recruitment and retention of clinical trial patients. Naturally, clinical trial managers and sponsors want to find effective ways to engage patients.
Social media is an obvious method to facilitate this engagement. Here we look at some of the risks and opportunities going social can deliver and how best to create engaging content.
Trials are successful when they bring a drug to market and in optimized time frames. Achieving this requires fast recruitment and high retention rates. Clinical teams should devote energy to connecting with patients online, says Bruce Gould at patient recruitment solutions provider PatientCentra. Strategies could include patient outreach ads on search engines and social media to recruit patients actively looking for treatments.
Gould adds that the value of social media advertising is that sponsors can target their messaging in specific and nuanced ways. Identifying patients according to age, location and gender are just some of the immediate target parameters that can be set.
Facebook ads, for example, can be a successful method of recruiting patients. In their article published in Internet Interventions, Lori Wozney and fellow researchers refer to a Canadian study in which Facebook ads resulted in a mean rate of enrolment of one participant every two days with a mean cost per enrolment of $19.27 (Canadian dollars). They call the results promising, but say more work is needed to convert the analytics into targeted engagement strategies.
The effectiveness of Facebook advertising is mixed, says Katja Reuter, assistant professor of clinical preventive medicine at Keck School of Medicine of the University of Southern California. She cites the following:
Social media platforms are useful. Christina Ditlof at Immpress Magazine says Twitter is effective for tracking discussions based on disease hashtags such as ‘#bcsm’ for breast cancer updates. Pharma teams should seek out online forums built for specific diseases or even look to create their own clinical trial app. One example is Stanford University’s SCI Cancer Clinical Trials app which patients can use to search for trials within defined eligibility conditions.
Engaging patients requires that social content is relevant to the audience. The images and headlines used in a social story or ad campaign can help make or break connections with patients. The team at Trialfacts, a patient recruitment services provider, says you wouldn’t use an image of an elderly person if the target audience is women aged between 18 and 25 suffering from migraines. An image of a young woman seemingly in pain because of a headache would be more effective.
Once pharma teams have identified their target audience, they need to provide scientifically accurate, useful and relevant content to prospective patients. PatientCentra president Dan Stempel explains that publishing content gives pharma the chance to connect directly with patients. The content should help patients understand their illness.
The messaging should include safety information and highlight the benefits of participation — while also noting the risks. Stempel says the more relevant the content the more shareable it is too.
While Stempel is speaking specifically about content marketing, the principles remain true for social media engagement. Even during a social campaign, pharma should look to engage patients outside of their own messaging. Lindsey Davis at Altitude Marketing says commenting on industry-related blogs, retweeting and liking relevant posts and maintaining an online presence shows patients that pharma is engaged.
Engagement is not just about producing content but listening to patients and their carers. Listen for complaints, confusion and interests, Davis suggests. Doing so will help to frame the social content in relevant and helpful terms.
Social listening not only helps with recruiting patients but informing study designs, explains Robert Geho, CEO and cofounder of Diasome Pharmaceuticals. “By listening and engaging through leading channels, companies are able to map patient and community thought leaders’ viewpoints on current therapeutic options, unmet needs, and physical and physiological issues associated with disease management,” he writes.
Geho says his company uses feedback from patients and caregivers in the diabetes community to inform trial planning meetings. Social engagement allows him to identify diabetes patients’ unmet needs in living with diabetes.
Patients are looking for useful and reliable content. Pharma teams are responsible to provide transparency at all times, writes Meghan Hosely at Forte Research, and investigators should be upfront about engagement and recruitment efforts. This will help connect with patients and create a positive reputation for the organization.
The same transparency is true for researchers that join patient advocacy and patient support groups. They should state who they are and what they want — and commit to patients that they will only share sensitive information with explicit consent.
Eli Lilly and Company uses its podcast in their transparent engagement efforts. The podcast content is shared across social media and discussed online. It gives the company many opportunities to show to patients that it is engaging with them and with patient advocates (representatives from both groups are guests on the podcast), as well as partners in technology, academia and policy, explains Lilly’s Joseph Kim.
Social media content strategies require careful planning that ensures safety precautions are built in. For a start, social media users often generate content that can jeopardize scientific integrity, say Luke Gelinas, Ph.D., and Ramon Jones, Ph.D., IRB chair and IRB member respectively. The messaging can impact upon participants’ understanding of a condition or a treatment in the clinical trial process.
For instance, a patient may wish to remain in a trial even if they are experiencing adverse effects because they have read online that this treatment has worked for others. Worse, they may not report these AEs to clinical trial staff.
A second and relevant concern with social media use is study unblinding. The researchers give the example of two patients in the same online forum reporting different effects of the same drug. A staff member engaging with these patients could inadvertently unblind the study by revealing who had received treatment and who had the placebo.
Social content should be strict on the data types that can be shared. Additionally, clinical staff need to be monitoring comments and exchanges to safeguard against any threats to scientific integrity.
While not a risk, one problem with social media is that many physicians are uncomfortable using it to recruit patients to trials, according to Mina S. Sedrak, Virginia Sun and Jennifer Liu at Jama Network. They are excited about the opportunities — increased visibility and awareness — but also concerned about the perceived administrative burden, risk of misinformation and uncertainty on how best to engage patients.
An effective means of tending to their concerns would be for pharma to provide lessons in social media recruitment strategies.
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