When it comes to recruiting patients for rare disease clinical trials, Patient Advocacy Groups can be a researcher’s best friend. They are one of the first places patients and their caregivers go when they are first  diagnosed with a rare disease, and these patients come to rely on advocacy groups to provide them with information, support, and camaraderie as they live with that disease every day.

3+ years looking for treatmentAs a result, these advocacy groups should also be seen as an invaluable resource for researchers, both as a portal to identify and network with potential trial participants, and a knowledge center where researchers can further educate themselves about disease treatment patterns, obstacles patients face, and their expectations for solutions from the biopharmaceutical industry.

One of the biggest challenges rare disease researchers face is recruiting patients from an already small population. However, because treatment options are often very limited, if you can find these patients they are usually far more open to participating in a trial than someone with a condition for which there are already many treatment choices. Engaging with patient advocacy groups is one of the best options for connecting with these patients. But to get the most value from these relationships you have to demonstrate your willingness to partner with these groups, before you can win their trust. 

5 Tips for Engaging Patient Advocacy Groups

  1. Start early. As with all relationships, establishing trust doesn’t come quickly. You need to invest time and resources into building a rapport with the advocacy group long before your trial begins. You can do this by participating in online conversations at the group’s website, fielding questions from patients, providing source materials, and offering experts for webinars, conference sessions, or other knowledge-building events. The more you can establish yourself as a reliable resource and thought leader, the more the community will turn to you for answers about their disease.

  2. Ask questions. If you want patients to participate in your trial, ask them what would make it more appealing. Often the biggest recruiting obstacle for patients are things like appointment timing, logistics, fear of too many needle pricks, and outdated protocols that exclude patients unnecessarily. The more you talk to patients through the advocacy group about their expectations, barriers, and desired outcomes from a trial, the more you can customize your protocol to appeal to their needs.

  3. Underwrite their efforts. Patient advocacy groups come in all shapes and sizes, from two-person outfits to major national organizations. Regardless of their size and status, however, they are all non-profit organizations and they are always looking for help. That doesn’t mean you should just cut a check and walk away. To get the most value from investing in an advocacy group, tie your donation to a specific cause or event, and back it up with human capital. That could mean sponsoring a conference and providing expert speakers, jointly delivering a webinar, or offering to produce educational materials for the group. In this way you help them meet their goals while further cementing your standing as a trusted leader within their community.

  4. Get the word out. Let the advocacy group know as soon as you have a trial planned, and ask for their help to connect with potential patients and physicians to support your recruiting efforts. For many of these sufferers, clinical trials are the best opportunity to receive treatments that will improve their quality of life—if they hear about it from someone they trust. If you’ve put in the effort to build a relationship with the patient advocacy group, they can become your loudest and most valuable champion. One of the primary goals of an advocacy group is to encourage research into new treatment opportunities, and to support efforts to move these trials forward. If they believe that you have their best interests at heart, they will help you achieve your goals.

  5. Follow Up. Patients with rare diseases are always eager for information about their disease, and impending treatments. Sharing information about a trial’s progress, outcomes, and next step will keep the community engaged with your work, and prime the pump for your next recruiting effort.