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Data analytics, social media and online resources are making recruiting for rare disease trials just a little bit easier, and that’s something to celebrate as we acknowledge Rare Disease Day this week.

Recruiting for rare disease trials is particularly challenging given that most rare diseases impact very small and widely dispersed patient populations. Finding those patients and facilitating their awareness of the study can be particularly arduous. Companies may open dozens of trial sites that only recruit a handful of patients – if any at all – and they often spend years trying to meet minimum recruitment numbers, which is expensive, time consuming and ultimately disappointing for patients and families anxiously awaiting new treatments to come to market.

Fortunately, data analytics and “social listening” is taking some of the guess work, and risk, out of this process by providing insights into what the primary considerations are for these patients. Social listening is a good initial step in helping to pull together the patient profile for a particular indication.

Tracking the patient journey

Social listening involves running an algorithm, or set of keyword-driven questions, to understand online activity related to a specific topic, or in this case, disease. For example, an algorithm might ask what people are saying on social media about Fabry disease (a rare genetic lysosomal storage disorder). Analytics technology uses the algorithm to scan the internet for any related discussions about the disease on social media, patient advocacy groups, journal articles and any other relevant online sources. The results are then compiled in a report that includes statistics on the frequency of topics at various websites, excerpts of conversations and additional key words associated with the indication. Because rare diseases have such small patient populations, a cluster of conversations from a specific website or advocacy group can be particularly meaningful.

Messaging and outreach

We have worked on many rare and orphan trials in which we have leveraged social listening to support the overall recruitment strategy, including trial messaging and outreach methods. Understanding the conversations that patients with a particular indication are having regarding a particular disease, as well as knowing the top websites that patients are viewing, helps us in the development of messages and images that would resonate with patients. For example, in one social listening report for neurofibromatosis, content theme results indicated that parents of newly diagnosed patients are struggling with where to find support, particularly as new mothers. This information along with understanding the top sites, such as parenting websites, support messaging development and location of trial awareness posts.

In some cases, we find the strongest conversations are happening on the websites or forums of one or two key patient advocacy groups for a particular indication. This helps us identify which groups have patients who would have potential interest in the trial. This information can also help in identifying potential key opinion leaders in order to network with experts who can provide assistance in recruiting efforts.

In other cases, we’ve had teams find that a disease has no strong advocates or support groups. This is particularly common in ultra-rare indications where there are so few individuals with the disease, little support or information is available to the patients. That information allows us to consider if building a patient community for the study will ultimately help engage patients and physicians in the space.

Early insights

Although not a key driver, social listening data can also be helpful in early protocol design of trials. Combined with additional sources such as physician insights, direct patient survey insights and site feasibility data, it can help uncover aspects of treatment and trials that are most important to the patient. For example, what are the symptoms of a particular illness that are most discussed among patients? What side effects of current treatment options are most discussed and are patients demonstrating high activity in looking for alternative therapies? Understanding the answers to these questions can provide good insight into designing trials that are patient centered and often can be easily answered or confirmed through social listening.

Ultimately, taking the time to do social listening in conjunction with traditional data insights, prior to the start of a study and even prior to finalization of a protocol, assures that trials start on the right foot. That benefits the biopharma companies who want to cut time and cost from trials, but more importantly ensures the patients voice and needs are factored into the trial design.