Hi!

Patients and patient advocacy organizations show up across biopharma communications in all kinds of ways: sharing lived experience, reviewing materials, advising teams, participating in research, speaking at events, and helping organizations better understand the communities they serve.

At our August Comm Convo, Rethinking What We Ask of Patients, we took a closer look at what makes those engagements thoughtful, useful, and sustainable.

A huge thank you to Erin Murphy (Alagille Syndrome Alliance and T2B Patient Advocacy & Engagement Roundtable Member), who moderated the conversation, and to our panelists Kathryn Brown (Cystic Fibrosis Foundation), Jennifer Mefford (Pulmonary Fibrosis Foundation), and Louise Vetter (Lupus Foundation of America).

Our top 10 takeaways:

1. Name the role you're inviting someone into. Decide up front whether you're inviting someone to inform, advise, or endorse, because that choice shapes how you prepare them, what they can influence, and how their contribution gets recognized.

2. Match the person to the purpose. Someone who shines telling their story on stage may not be the right voice in a protocol review, and the advocacy organization often knows who's suited to which room.

3. Broaden beyond the same few voices. When the same few people carry one request after another, the perspective on the disease narrows, and part of the organization's role is keeping the wider community present in the conversation.

4. Price the whole contribution. There's no standard rate for someone who joins on Zoom, so compensation should reflect their preparation and travel time, with the National Health Council's fair market value guidance as a shared benchmark.

5. Clear the barriers money doesn't cover. Covering costs is a given, but the harder part is everything around it: a caregiver's travel, an overnight stay, oxygen, medication timing, even altitude and the walk from room to restroom.

6. Close the loop, especially when results may disappoint. Someone contributes and then hears nothing about how it landed, and trial participants sometimes learn results from the press release, occasionally before their own sites do.

7. Fund the relationship before you need it. Fund PAOs as early as possible, and share your priorities for the year, so a short-notice speaker request draws on an existing relationship instead of a fresh contract.

8. Engage early, well before commercialization. Being several years from commercialization is not too early to build the relationship, and teams that struggle to recruit have often chosen sites far from where people living with the disease are.

9. Align comms and advocacy internally. Debrief with your advocacy counterparts and surface where you see things differently, and expect compliance to lag, since it can treat patients as scary and trail the trust already built.

10. Rethink what equity looks like. In CF, for example, the sharpest equity gap runs between who can access today's drugs and who can't, sometimes a question of care, sometimes of mutation, and it doesn't sort into tidy demographic boxes.

There was a lot more packed into the hour (replay here), and this conversation was designed as a starting point.

We'll keep building on it through the T2B Patient Advocacy & Engagement Roundtable, including our next roundtable webinar on October 29th. Save the date — we'll have more to share soon.

And thank you again to Erin, Kathryn, Jennifer, and Louise for such a candid and practical conversation.

Have a good weekend,

Lynnea