The do’s and don’ts of working with patient advocacy groups.

Patient advocacy groups (PAGs) are an incredible resource for patients worldwide. They come in many shapes and sizes – from global organizations that support a breadth of conditions under a large umbrella therapeutic area, to “go-to” organizations dedicated to a specific indication, and even local or regional organizations and support groups.

No matter the makeup, patient advocacy groups can be key to gaining patients’ trust and spreading awareness for clinical research studies. But working effectively with an advocacy group takes thoughtful strategy and planning. Check out a few do’s and don’ts we recommend before reaching out to promote a study.

DO.

Do take a custom approach. Every advocacy organization is different – whether in size, mission, or staffing structure – which means partnership opportunities will vary greatly. It’s best to approach each organization individually and be prepared to scale your request up or down based on conversations.

Do ensure the request is mutually beneficial. The end goal is to share study information with those who may benefit from research. However, it’s important to remember that the advocacy organization has its own set of goals and promises to uphold. The partnership request should be a win-win for both parties.

Do honor existing relationships between a sponsor and an advocacy group. It is very likely that the study sponsor already has a relationship with one or many advocacy groups, though their partnership goals may differ from your patient recruitment efforts. It’s wise to be as transparent as possible when reaching out in order to find a way to complement the existing relationship. When possible, have a conversation with the sponsor’s advocacy/patient engagement teams to come up with an outreach plan.

Do build in enough lead time. Partnerships take time. An outreach plan should leave enough room for you to have conversations, review and vet opportunities, negotiate a contract or an agreement, provide assets, and get things up and running.

Do know your budget. While occasionally there will be opportunities to promote a clinical trial as part of a larger membership benefit or social media promotion, most likely there will be a fee (similar to a media placement) with partnership opportunities. The fee can vary drastically based on the audience reach, level of targeting, length of campaign, and other factors set by the organization.

DON’T.

Don’t make assumptions. Just because you have information to share and a budget to support the effort doesn’t mean everything will fall into place. It’s important to keep in mind that not every group is willing to partner with sponsors or promote clinical trials.

Don’t overcomplicate it. Keep partnership requests simple and straightforward. Many of these organizations have a small and very busy staff. Try to make this partnership simple for them to execute.

Don’t push it. If the organization isn’t interested in partnering, stops responding, or is hesitant about the details of the request, thank them for their consideration and move on.

These are just some of the initial points to consider when looking to partner with a patient advocacy organization. Our team of experienced PR professionals can leverage relationships with PAGs to raise awareness for a study and support your patient recruitment efforts. Want to learn more about how we can implement an advocacy outreach strategy for your next study? Contact us with questions.