How have online patient communities evolved in recent years and how should clinical trial sponsors engage with them?
Patient engagement has always played a central role in clinical trial recruitment campaigns — from educational brochures and traditional media ads to information sessions and physician referrals, the industry is well aware that a comprehensive outreach and education strategy is the key to successful enrollment.
However, as internet accessibility improved over the past decade (and patients became more comfortable using it to search for sensitive information), we’ve seen a massive shift in both consumer behavior and expectations. Today, more than 77% of patients begin their path to treatment with an online search. Google alone receives more than 28 billion health-related search queries every year.
But patients aren’t just relying on search engines for information about their health — increasingly, web users are turning to social media and online communities for diagnostic information, support, and treatment options. In fact, a full 20% of of the total patient population online joins social media forums or healthcare communities. What’s more, over 25% of consumers with chronic conditions use social media to find people with similar health issues, and 40% report the information they find on social influences their decision-making throughout their paths to treatment.
What’s clear is that these online communities present an opportunity for trial sponsors to reach specific patient demographics with the resources they need to understand all of their treatment options and ultimately, make informed decisions about their health. However, a number of unique considerations must be taken into account in order to effectively engage this audience and see a positive upswing in an enrollment campaign.
What Are Patient Communities?
Simply put, patient communities are advocacy groups created by patients or pharmaceutical companies that aim to serve as a venue for information exchange and peer support.
Although these groups have been around since the 1950s, they’ve historically been tied to physical locations, such as individual hospitals, medical practices, or community centers. But in the past decade or so, more and more of these groups are moving online — and more and more patients are joining them.
PatientsLikeMe, founded in 2004, is a perfect example of the incredibly broad reach that online patient groups can have. With over 400,000 members and sections for dozens of conditions, PatientsLikeMe enables patients to track treatment outcomes and recovery progress with a variety of unique metrics. For example, cerebral palsy patients can track a new drug’s impact on a range of areas, such as sleep habits or physical comfort, for months or years after beginning treatment. Other patients can then view these outcomes in order to evaluate which treatments best meet their individual priorities.
The Pharma industry has apparently seen the value in these peer-to-peer support networks and has begun to roll out online communities of its own. Belgian R&D specialist UCB, for instance, has created a number of individual patient portals for users suffering from epilepsy, Parkinson’s Disease, and Crohn’s Disease. Each site has over 100,000 members and gives patients a forum to discuss their experiences, along with educational resources and tools to track their symptoms over time. Interestingly, the sites are unbranded and don’t promote specific products. Instead, they allow researchers to gain a more nuanced understanding of these conditions from a patient’s perspective, enabling them to better serve their needs.
“Technology and social media have helped organizations get the word out about their missions,” Tricia Mullins, VP of Strategic Alliances at Global Genes, says. “Patient communities are operating at a higher level of engagement and they want to do more for their patients and they are taking action.”
According to Mullins, social media emerged as a primary touchpoint for patients with rare conditions, primarily stemming from a feeling of isolation and frustration. Rare diseases patients can often go through as many as eight specialists before receiving an accurate diagnosis, she explains.
Understanding Your Audience
To many, these advocacy groups may seem like an even better version of the traditional patient database — after all, these are massive groups of active patients that are both highly visible and relatively easy to pre-qualify, right?
In reality, it’s not that simple. Engaging these online communities is a sensitive matter, and patient privacy should always be top-of-mind. As such, it’s best to take a patient-first approach, focus your efforts on education and advocacy, and perhaps most importantly, listen.
Scott Schliebner, VP of Scientific Affairs and Rare Diseases at PRA Health Sciences, puts it well: “We don’t want to have clinical trials designed in a vacuum, cross our fingers and hope that patients will enroll. We want to bring patients and families into the process, hear what’s important to them, and incorporate their input into the study design.”
Community members are offering real-time opinions about trial experiences, new treatments, and how those experiences compared to their initial expectations. Sponsors can engage in ongoing conversations and with individual “influencers” within these communities, or leverage powerful social analytics and big data algorithms to glean insights on a much larger scale.
The point is that online communities represent a huge opportunity for clinical trials at large — with the proper mindset and a patient-first approach, sponsors can enhance the overall level of engagement and education, and improve the patient experience, which will undoubtedly make a huge impact on enrollment outcomes in both the short- and long-term.