As crucial as clinical trials are for pioneering new treatments, it remains a struggle not only to recruit patients, but to keep them enrolled for the duration of the study.
In fact, competition for trial subjects grows more intense every year, according to a white paper from InVentiv Health, while regulatory agencies demand that larger target populations undergo testing over longer periods.
Trials have also shifted to focus more on specific illnesses and niche populations. Additionally, there are fewer “treatment-naïve patients,” which makes recruitment even harder.
So, any new means of engaging and recruiting patients should be tested and indeed social media is proving to be a valuable method for trial sponsors. While it doesn’t provide an infallible solution to a perennial problem, social media does offer an additional and highly targeted means to find prospective patients. Sponsors have taken note of this: Approximately 11 percent of clinical trials in North America now include social media communications.
It sounds like straightforward advice, but Rob Peterson at the marketing agency Barn Raisers, says it’s critical: Trial sponsors and recruiters need to listen to the buzz on social media before launching their recruitment drive. Important questions to answer include:
The advantage of early research will mean a more targeted approach that speaks directly to patients’ needs, Peterson writes. The campaign can then focus on those key themes, ideas and words for better engagement.
While research before the trial is important, social media also allows for long-term follow ups and ongoing communication.
Facebook remains the most effective platform for clinical study recruitment, Dan Stempel, president at at MD Connect writes. Not only is the user base enormous (in excess of 2.2 billion as of Q4 2017), it can also, in some cases, represent the whole population with particular chronic or rare conditions, such as Parkinson’s or Alzheimer’s disease.
Facebook also provides powerful targeting tools that can help trial recruiters tap into “niche patient segments” through analysis of past actions and demonstrated interests, Stempel adds.
It should be noted that while social media campaigns provide a more targeted approach to recruiting, the result is fewer patient leads. This is not a bad outcome, Stempel explains, because the quality of potential recruits will be significantly improved compared with traditional targeting methods. The result, he argues, is reduced cost and faster enrollment.
It’s important to know that social media clinical trial recruitment needs to comply with certain FDA regulations, which can be reviewed in various guidance documents.
Just as social media communications need to comply with FDA regulations, advertising also needs to adhere to similar rules that regulate traditional advertising, RHO’s Kristen Snipes at Clinical Informatica News explains.
Advertisements should meet the same Institutional Review Board approval rules as required for traditional advertising. And the type and format of social and digital media affects how trial sponsors should present their information to the IRB.
Here’s a quick breakdown:
While following the rules of advertising is essential, Snipes gives the additional advice to say less rather than more on social media. There is the obvious practical limitation of limited space on some platforms such as Twitter, but there is also the danger of over-explaining the types of patients trials are seeking. This can result in prospective patients falsifying their details and conditions in order to meet requirements.
It’s worth knowing that around 70 percent of internet users are not native English speakers, Leanne Orchard explains at Pharmaphorum. This means a social media recruitment campaign needs to be adapted for the particular countries in which it will recruit and run.
This requires more than a simple verbatim translation. The best campaign will have a nuanced understanding of colloquialisms and attitudes towards certain conditions and treatment options.
“Recognisable terminology” is key, Orchard says.
That might include knowing that a medical term is not the one used by the general population or even by those with the condition. Unlike the medical community in Germany, for example, people there say ‘shuppenflecht’ when referring to psoriasis.
Not knowing this can potentially eliminate a large pool of patients. And translation without understanding the broader linguistic use, including the wording of reimbursement clauses, can be detrimental to the overall recruitment campaign.
Getting the words right is part of honing the trial message for a well-defined target audience.
Key influencers — those with a strong presence on social media platforms — can be employed to drive information and opinion on a prospective study, while developing a rapport with the online community, Dian Griesel, Ph.D., founder of corporate communications firm DGI writes at Clinical Leader.
Influencers might include medical professionals looking to boost their reputation online or those that are eager to gather and share information and generate discussion on forums. It could even be a health writer with a strong working knowledge of clinical trials.
Patients themselves can make powerful influencers. Their personal and very relevant experience and insight into their condition can help give their opinions greater weight. The role of the influencer is a bit like patient advocacy groups although the former’s potential reach is far greater.
Influencers need to create engaging and honest content that encourages discussion. The aim should be compelling stories as this will entice patients to learn more.
Trust can be built with the help of influencers. Potential trial participants will not only be more inclined towards products and treatments the influencers suggest, but also likely to share information with friends, further deepening the recruitment pool.
Social media not only attracts patients for recruitment, but can draw in the wider community of families and caregivers, Barb Geiger, executive vice president at Clinipace, writes. Consider the elderly or infirm that for whatever reason are unable to use the internet. Their concerned family members and caregivers perform their own research to offer better support, and in doing so can access information to clinical trials.
Common issues such as prohibitive cost, or target population age or overly restrictive regulations are often cited as barriers to adopting social media recruitment tactics. But digital health company Seeker Health says advertising on social channels works out to be cheaper than running campaigns on TV or radio and the reach is much greater.
Patient age is also not an issue, the company explains. Campaigns simply need to engage on the correct platform. Younger people (18-29 years old), for instance, are active on social platforms such as Instagram while older people between the ages of 50-64 tend to use Facebook.
Social media also makes it easier to keep track of how effective campaigns are at engaging certain demographics. Seeker Health used Facebook to promote a clinical trial for breast cancer, targeting women aged between 35 and 65. Users were more engaged with the campaign the older they were, with the 55-65 age range being the most responsive.
Indeed, Henry Kerali, managing editor of Clinical Trials Arena, says cost, age and regulations are myths and can be debunked by adopting the following approaches:
While there are many benefits to gain from using social media to recruit trial patients, new challenges arise as a result, says healthcare marketing agency Xavier Creative House.
Patients are likely to share study experiences among online communities and on social media about the efficacy and safety of trial treatment or identifying those that received a placebo. Discussions about side-effects can also occur, often posted by patients under pseudonyms. These might include calls for other patients to stop taking the treatment medication, for example.
All of this can also be grouped under a broader concern and that is patient bias. This includes patients trying to predict trial outcomes while the study is still in progress. The effect could be serious, such as negative perception of a drug before results are even determined.
There are, however, safety measures trial sponsors and recruiters can take. Chat rooms, moderated by trial staff, can be useful. Sending regular and clear messaging to patients is also key as is explaining the importance of keeping certain aspects of the trial confidential. Patients need to know that prematurely sharing data out of context can render the study meaningless, postponing the emergence of new treatments.
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