Simple Tips for Building Strong, Lasting Relationships with Patient Advocacy Organizations

Simple Tips for Building Strong, Lasting Relationships with Patient Advocacy Organizations

Recruiting patients for clinical trials is an expensive and time-consuming process, taking about 18 months on average. It’s no surprise then that many biopharmas and medical device manufacturers are taking steps to speed things up and make patient recruitment more efficient. 

One often overlooked but invaluable resource is patient advocacy organizations (PAOs). Partnering with these institutions can be a huge boon to your recruitment efforts, but only if you take the time to build relationships and use them strategically. 

In this blog, we highlight the benefits of PAOs and discuss several things you can do to build trust and a lasting rapport with them. A little bit of effort and a sound strategy can fill your patient pipeline and help you both work toward mutually beneficial goals. 

What Are Patient Advocacy Organizations?

Patient advocacy organizations, also known as patient advocacy groups, represent and support people with specific diseases and/or disorders and their families. These institutions provide educational resources, support, and counseling so that patients can access cutting-edge treatments and achieve the best possible quality of life. 

In addition to providing support and encouragement, many patient advocacy organizations host family conferences, spearhead research projects, and help spread awareness.

More recently, they’ve played a vital role in getting treatments and therapeutics approved by regulatory bodies. This is exactly why you should consider including them in your recruitment efforts. Since these organizations act as a home base for anyone suffering from rare diseases or disorders, access makes it much easier to track down the patients you’re looking for. 

Steps to Building Strong Relationships with Patient Advocacy Organizations

Here’s a four-step process for building a rapport with patient advocacy organizations in your indication:

Step 1: Do Your Research

Strong, collaborative partnerships don’t just happen overnight. As with any relationship, you need to build a foundation of trust and mutual respect first. The key? Making time for research.

Start by identifying all of the patient advocacy organizations in your specific indication. Diseases and disorders that affect thousands of patients often have well-established groups. For example, the National Organization for Rare Diseases (NORD) has a rare disease database featuring a list of PAOs. Other, lesser-known ailments may not have an official organization but rather a Facebook page where those who are suffering can connect. Regardless, it’s important to find these pockets of community and add them to your list of potential contacts. 

It is best not to reach out to these organizations blindly. Take the time to research their size, capabilities, and funding levels. Some institutions have a full team of employees but others are run by only one or two passionate individuals. Therefore, it’s important to identify those that are most likely to be interested in working with you. 

Step 2: Make a Positive First Impression

Connecting with a patient advocacy organization is a lot like finding a new job or sending cold emails to make sales. You don’t want to rush the process or create one cookie-cutter-type message and then blast it out to dozens of individuals. It’s important that you’re strategic and sensitive to the condition(s) the organizations support , as you only have one chance to make a good first impression.

Start by researching your professional network. Do you have any colleagues who work or volunteer with a PAO in your indication? If so, connect with them and explain that you’re trying to recruit a subset of these patients. 

If that’s not an option, search for key stakeholders or decision-makers within your indication. For example, visit the PAO’s website and track down the appropriate point of contact. Read their biographies and scan their LinkedIn profiles, taking the time to write down anything that stands out. 

Once you’ve finished researching, draft a brief email that explains:

  • Who you are
  • The work you’re doing
  • Why you’re reaching out
  • What you’re looking for

Close your message with a call to action. Something like, “Would you have time for a 15-minute call sometime next week?” Remember: your goal isn’t to seal a deal right away. It’s to learn more about the organization so that you can build trust and hopefully collaborate in the future if it seems like a good fit. 

Instead of making an immediate offer, it’s best to focus on the relationship first. Be punctual, friendly, and empathetic. During your initial chat, try to get a feel for the PAO’s struggles and needs. Then, develop a pitch that explains how your organization can best support its patient community throughout the course of your trial.

Step 3: Be Flexible and Roll with the Punches

No two patient advocacy organizations are exactly alike. Some are incredibly well-funded and have formal partnership programs in-house, while others are loosely organized and run by volunteers. If collaborating with the former, your partnership might need approval by the organization’s board, which can extend the recruitment process. 

A well-funded organization isn’t necessarily better than a smaller group, but it’s important to remember that challenges will arise. Instead of rushing the process with a single goal in mind, remember that building relationships with PAOs takes time. The benefits can be plentiful but you have to be willing to play the long game.

Step 4: Draft and Sign a Formal Partnership Agreement

After you find a PAO who’s willing to collaborate with your biopharma or medical device manufacturing company, take the time to hammer out an official agreement, outlining each parties’ responsibilities in writing. 

A formal draft documenting the scope of work and a formal confidentiality agreement might seem like an extra hoop to jump through, but it’s key to protecting your organization and the PAO. With a blueprint in place, you have something official to refer to should questions or disagreements arise during the research phase or clinical trial. 

After everyone signs off on the document, you can get to work creating recruitment materials, advertising your research project, and developing targeted outreach.

Building Relationships with PAOs – The Bottom Line

Patient advocacy organizations can be an invaluable resource for biopharmas and medical device manufacturers, particularly when it comes to recruiting patients with rare disorders or diseases.

But to build strong relationships with these organizations, you need to be willing to give as much as you take. Do your research, make a good first impression, and be willing to adapt throughout the process to ensure mutually beneficial success and easier patient recruitment in the future.

This article was inspired by a recent Guest Column in Clinical Leader written by Richie Kahn and Amy Skiba


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