Strategies for Finding ‘Hidden’ Patient Populations

A little less than five percent of the world’s population are estimated to suffer from more than 7,000 different types of known rare diseases. There are even more medical conditions where those who have them are too embarrassed to talk about what’s wrong or simply don’t know exactly what ails them.

Yet, these individuals are often exactly who clinical researchers must cost-effectively locate and attract to participate in the randomized clinical trials needed to find potential treatments and cures for some of the world’s most difficult diseases and conditions.

So, how do you manage to find these “hidden,” difficult-to-find folks and then recruit them to take part in important clinical research?

The answer: A touch of global experience, a dash of technology, a tad of partnership, and a lot of knowing how to relate to people impacted by disease no matter their background or location in the world.

It’s not a needle in the haystack like before. Now we can pinpoint potential trial participants.

Many times, the search begins with medically-compliant social listening using Web-based and social media networks and tools to locate communities of people discussing specific symptoms, conditions or diseases. In the past decade, social media, specialized cloud-based clinical research platforms and more globally connected disease advocacy networks have made this initial part of the process all the easier for professionals who know how and where to begin sleuthing.

Still, the search is not always fast or easy, particularly if those being sought represent a patient population with a rare condition sparsely spread around the globe. The fact remains that approximately 50 percent of rare diseases do not have a central advocate or specific organization supporting a rare disease’s cause. Another complication, not all diseases and conditions are acknowledged in all countries and cultures.

Then there are the challenges presented by finding and engaging those with conditions that are less openly discussed, socially stigmatized or in personally sensitive areas of human health like sexually-related conditions and disorders. How do you engage someone who does not want to disclose a medical condition out of fear or embarrassment?

One of our teams faced just this issue. They were tasked by a sponsor with locating, screening, and randomizing 150 patients who had suffered from at least three unexplained miscarriages, but who still were trying to conceive a child. Definitely needle in haystack conditions.

The team worked with the Miscarriage Association to obtain just the right emotional tone of outreach to the women they sought to participate. They then used that information in a social marketing campaign on Facebook and Twitter. Each week, 50 to 100 new patients visited the study website by following links from social media. Those women were each prescreened using a simple website-based form.

Once screened and accepted into the study, interaction moved off-line and the human touch was applied. Research shows that keeping in regular contact with clinical trial participants is an effective method of lowering research study attrition. In this instance, clinical investigators, study nurses and midwives all gathered at an all-expenses paid recruitment retreat to build a personal bond with the study participants and allow them to share their experiences and recommendations with the team and study sponsor.

Specific recruitment tactics may vary from clinical study to clinical study when trying to reach difficult-to-find patients. But experience involving difficult-to-find patient populations reveal four must-haves for sponsors to achieve the most timely, cost-effective and complete results:

  • Knowing where and how to reach difficult-to-find patient populations across demographics, countries, and cultures
  • Partnerships with rare disease/condition foundations and health systems/community-based clinics who regularly deal with “hidden” patient populations
  • Understanding how to leverage the latest technology and social marketing techniques to recruit and retain clinical trial participants
  • Recognizing clinical trial participants are people, not just patients

Author Details

Angi Robinson
Angi Robinson has been conducting pediatric and rare disease studies at Premier Research since 2001. She has provided oversight and full management support for over 30 rare disease studies, including multiple US and global programs. She has also supported FDA Pre-IND meetings, IND submissions and NDA/BLA project directorship.
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