Guest Column | September 15, 2023

Best Practices For Identifying And Partnering With Patient Advocacy Organizations

By Richie Kahn, cofounder and principal, Canary Advisors, and Amy Skiba, executive director, Lung Transplant Foundation

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When considering best practices for identifying and partnering with patient advocacy organizations (PAOs), it’s important to recognize that the process is a lengthy one that requires considerable forethought and planning. And why shouldn’t it be? In many respects, the work is similar to that performed by your colleagues in commercial and medical affairs.

Imagine, the commercial team is preparing for launch and looking to identify clinicians driving prescribing practices. If they’re well resourced, they rely on a fleet of medical science liaisons (MSLs) to identify critical prescribers, make inroads, establish relationships, and generate awareness of your new product in hopes of impacting prescriber behavior. Initial relationship building can take substantial time and, in order to be most effective, periodic nurturing.

While therapies are still in development, medical affairs groups look to recruit KOLs as PIs for their studies. For a typical Phase 2 program, they might approach their colleagues in site identification with eight pre-identified sites (all KOLs) and a need for 10 more. Every sponsor working in your indication is likely to have the same docs on their site list, so the importance of a long-term, mutually beneficial relationship with clinical trial sites (coordinators and doctors) is important to drive recruitment for your trial and ensure that they decide to partner with you and not the competition.

In either scenario, the relationship building takes time, and the nurturing may go on for years. There’s a lot to do. Among other tasks, you need to conduct landscape surveillance to identify key prescribers and clinical trial KOLs; learn more about capabilities; determine bandwidth; and establish a system for tracking results. Identification of and partnering with PAOs isn’t dissimilar.

Research PAOs Before Reaching Out

Identifying and partnering with PAOs begins with a detailed landscape assessment of the advocacy groups in your indication. For some indications, these groups are mature, robust, and well defined. At times, they may fall under the umbrella of a larger group. For example, advocates in the Leber's hereditary optic neuropathy space come together through events sponsored by the United Mitochondrial Disease Foundation. However, you might also find that there has been no formal nonprofit established and an advocate community may only loosely exist on Facebook. And if you are currently working with an organization in a particular disease state, ask those groups you may already be working with if there are others in the same space that might be interested in collaborating.

Once you’ve conducted your landscape assessment and mapped out the players, you need to begin building the relationships. Advocacy organizations aren’t interested in purely transactional relationships. This includes requests from sponsors to place clinical trial listings on an advocacy organization’s website or to solicit patient interest in a trial through email communication in exchange for payment. Remember, PAOs are a trusted voice during an often-difficult patient journey. When patients have a trusted resource like an advocacy organization, it can build their awareness of and trust in the clinical research process.

The key to success, then, is to really dig into the PAOs in your disease state of interest and do some legwork before beginning a thoughtful and respectful dialogue. Educating yourself on the work that each organization is focused on can be a great way to show that you are invested in learning more about the specific ways you can create a relationship and begin to work toward mutual goals.

Before reaching out, you’ll want to be mindful of the following considerations:

  • Advocacy organizations come in different sizes, with various capabilities and funding levels. Many advocacy organizations are a team of one, working nights and weekends for little to no salary because they’ve been touched personally by a condition.
  • While passion drives the advocates running these organizations, never make the cardinal mistake of implying that altruism alone is a sufficient reason for them to work with your team.
  • Building on the first two points above: Resources are limited — so keep PAO bandwidth in mind.
  • Never put advocacy organizations in a position where they are being asked to do something you wouldn’t do yourself.
  • While financial support is always appreciated and often necessary for an organization to continue their work, there are a number of other ways you can support advocacy organizations, such as providing access to resources like graphic designers, marketers, web programmers, etc. To learn more about those possibilities, consider reading Health Tech & Patient Advocacy Partnership Playbook by Lilly Stairs1.
  • Ask yourself: Why is your organization working in this space, and what are you able to bring to the table?
  • Ask yourself: What is your vision for a strategic, long-term partnership?
  • Research how familiar the PAO might be with industry relationships. If they’ve worked with industry previously, what was the result?

Making Contact And A Positive First Impression With A PAO

Now that you’ve done the research, it’s time to start building relationships. A great way for an introduction in the nonprofit space is always a colleague. As previously indicated, patient advocacy organizations are almost always understaffed (and remember, often an n=1) and bandwidth limited. Be clear in your communication — state  the reason you’re reaching out and the topics you’d like to discuss.

Go through your LinkedIn or personal Rolodex (does anyone still use these?) to see if you know anyone who can provide a warm introduction. Perhaps a friend has previously raised money for an organization, does some volunteer work, or has a loved one impacted by the indication of interest. If you don’t know anyone personally, social media can be a useful. The particulars depend on where you work (and your compliance team) but a simple LinkedIn post looking for introductions to individuals at advocacy organizations that serve a particular patient community can do wonders.

The alternative, of course, is to do some digging. Search the web, conference proceedings, and agendas for lists of individuals at particular advocacy organizations who have been out and about as of late. Read bios on an organization’s website to determine the appropriate point of contact. This is essentially business development work, so you’ll want to get a clear understanding of the key stakeholders and the problems they’re working to address.

When you identify a prime point of contact, consider sending a brief email or LinkedIn note that clearly articulates:

  • Who you are
  • The work you do
  • Why you’re reaching out
  • What you’re seeking

Be flexible on the timing and duration of an introduction (perhaps a 15-minute virtual coffee on an evening or weekend will be necessary if schedules are jampacked) to get to know each other and do a little Q&A. Come prepared to listen and answer any questions your new point of contact may have. It’s entirely possible that you won’t even get to the “pitch” during this first call.

Each PAO is different. Some may have formal partnership teams and attorneys in house. Others are run by a single volunteer or employee. Board structures vary as does the necessity of running partnership decisions by them.

Like with any MSL or site identification team, you’ll be spending a lot of your time establishing rapport, feeling each other out, and getting a sense of whether this is someone with whom you can see yourself building a productive, long-term partnership.

Here are some additional considerations for beginning a PAO relationship:

  • Remember the basics for establishing trust: punctuality, tone, empathy, clarity, responsiveness, and body language.
  • If you can’t sufficiently answer a question, say so. Promise to follow up and make sure you reach out in a timely manner.
  • Once you’ve given your elevator pitch, put your consultant hat on and focus on learning about what the PAO needs and what’s keeping their leader up at night. There’s an excellent chance that you’ll find some common ground.
  • Consider how your organization can best support the advocacy community.

If there’s mutual interest in creating a formal partnership, scope out a formal agreement (preferably as free of legalese as possible) and get everybody’s buy-in in writing. After learning about the PAO’s interests and exploring your organization’s needs, a scope that meets at the sweet spot can be formally drafted up. Even if a formal confidentiality agreement and scope of work don’t seem necessary, they protect all parties involved and make it easier to sort out any misunderstandings that may arise later.

Once a mutually beneficial relationship has been established, you can begin talking through things like clinical trial listings, sponsored webinars, and targeted outreach.



About The Authors:

Richie Kahn is a public health professional by training, clinical researcher by trade, and patient advocate by necessity. He is cofounder and principal at Canary Advisors, a patient engagement firm that partners with organizations firmly committed to patient focused drug development.

Amy Skiba’s nonprofit career started in 2016 as the executive director for the NEPA region of the American Heart Association, where her focus was on development and community health initiatives to improve outcomes for heart and stroke patients while raising critical funds for research. Amy brings her prior nonprofit experience and patient focus to the Lung Transplant Foundation in order to continue the critical work being done for the lung transplant community.