Top 5 Tips for Collaborating with Patient Advocacy Groups for Your Patient Recruitment Efforts

Clinical Researcher—December 2021 (Volume 35, Issue 9)


Contributed by Leapcure


In times like these, when there is both a great fear of the unknown and a great push for innovation, patients need to have trust in their medical institutions and healthcare providers. Without the proper trust when so much is at stake, study sites will not be able to get willing patients in the door to participate in vital clinical trials and other studies of innovations in medicine and different therapeutic methods.

There needs to be transparency and proper communication between the patient, doctor, and researcher. This is why patient advocacy groups are so essential to patient recruitment. These groups provide a platform in which patients are the experts on their condition, and by working with a patient advocacy group, they can be connected with sites running potentially beneficial clinical trials.

Still, for certain rare conditions, there just might not be many patients available, and perhaps even fewer who are willing to enter into clinical trials and experimental treatment. Rare illness and disease can be an alienating experience, with many ups and downs. By working with advocacy groups, study sites can be assured that they are working with patients who are accounted for, cared for, and eager to participate in innovative, cutting-edge clinical trials as well as to provide insights into the research process. Here are some tips for site leaders who wish to collaborate with a patient advocacy group.

Be Patient-Minded

The patient should be the central focus of any healthcare and research practice. Especially now, as patients have become used to communicating with each other; there are online forums, discords, and subreddits in which people with particular conditions will share their experiences with and opinions on the latest innovations and clinical trials to treat their conditions.

Put simply, you want to ensure that your patients are as happy—within reason—as they can be. Of course, medical treatment might not always be pleasant, but taking a compassionate approach and showing the patient that he or she is the most important person in this process is essential in recruiting patients. It also helps build trust between sites and patients—a trait that is critical to this partnership.

Run an Audit of the Patient Advocacy Group

Whatever research you are conducting, you need to make sure that the patient advocacy group you are working with is the right fit for you and your team. For finding a patient advocacy group to work with, make sure you do some preliminary research—what is the group’s mission, audience, vision, issues, programs, campaigns, and stakeholders?

You should run those audits on several different patient advocacy groups and then create an inventory of your findings. Now you have a catalog of different patient advocacy groups to select from. The next step might be conducting phone interviews with each group, in which you will probe further into the nature of their missions, details on who they work with, and clues as to whether they will be a suitable fit for you and your team.

Remember, patient advocacy groups are not a one-size-fits-all type of business. There is a spectrum of players out there, and you need to do your research to ensure that you are working with the right group. The better your background research, the better you will be able to determine whether a group’s mission aligns with yours.

Find Mutual Points of Interest

When conducting business as sensitive as medical research, the cooperating parties need to have some alignment with each other, especially in terms of mutual points of interest. By having mutual points of interest, you can have confidence in the reciprocation of whatever deal has been agreed upon. You want to make sure that other stakeholders have a real interest in maintaining the relationship you have entered.

This point harkens back to the importance of running an audit: You want to make sure that you have some similar motivations so that you might have a similar goal in mind. If your goals and desires are totally out of line with each other, then conducting medical research together might not result in a fruitful relationship.

Elevate Transparency to a Best Practice

When working with doctors, patients, and other stakeholders, you want to make sure that you are being transparent and that this transparency is obvious to all stakeholders. Transparency means trust and honesty, and that is exactly what a patient and a patient advocacy group want to see in a medical team; they do not want to feel that some vital information is being left out of the conversation. To build strong relationships with patients and other stakeholders and a strong reputation in your respective medical community, it is essential to build a sense of trust and transparency.

Make a Commitment

If, after agreeing to work with a patient advocacy group, you suddenly pull out of the relationship, you can be sure that the group—and perhaps others—will be wary of working with you ever again. On the other hand, if you follow through on your commitments and are a trusted partner for the duration of the relationship, then that patient advocacy group—and perhaps others—will be excited to work with your team. After all, real progress in medicine can only happen if there is trust between the stakeholders; if there is not, nothing will get done, and patients or other stakeholders will withdraw from the deal.


By working with a patient advocacy group, you can gain a much better handle on managing relationships with patients and other stakeholders. However, you do not want to work with a patient advocacy group without ensuring that you have similar interests and goals in mind. It’s not always an easy process to follow, but not only can you facilitate finding willing patients in concert with the right patient advocacy partners, the extra work involved might be essential for the sort of research you and your team plan to conduct.

Through an honest commitment, heightened levels of transparency, and a patient-centered approach, you can reap great benefits and open the door to many great relationships with patient advocacy groups and patients alike.

Contributed by Leapcure, an organization devoted to working with patient advocacy groups and clinical trial sites to connect patients to research opportunities around the world.