Hi!

Patient advocacy touches much of the work we do as biopharma communicators: understanding the communities our companies serve, building trust, shaping communications, and helping colleagues make informed decisions.

That’s why we hosted Beyond the Walk, a webinar led by T2B’s Patient Advocacy & Engagement Roundtable. We wanted to explore where communications and advocacy intersect and what it takes for patient perspectives to shape decisions across drug development.

The conversation offered practical lessons for communicators on building patient partnerships, bringing patient insights into our work, and understanding the responsibilities that come with these relationships.

Top 10 Takeaways From Beyond the Walk

1. Judge advocacy by the decisions it changes. Without that standard the function risks becoming a checkbox, and changing decisions requires time, which means measuring “early” against the asset’s full life cycle rather than waiting until commercialization.

2. Plan for patient input as a regulatory expectation. Recent Reagan-Udall Foundation and FDA meetings on rare disease highlight how patient input is shifting from a nice-to-have to a formal regulatory obligation across milestones from early development through post-approval.

3. Weigh entry timing against your footprint in the therapeutic area. Companies new to a disease area risk an in-and-out pattern if an asset fails early. While groups often prefer early, confidential invites with managed expectations, teams with established therapeutic footprints have much more leeway to engage at preclinical stages.

4. Co-create or at least test launch materials with advocacy partners before use. In one pre-launch example, an advocacy group’s reaction to core patient and physician materials forced the entire commercial program to pivot, proving that internal experience cannot replace lived patient experience.

5. Set up master service agreements before co-creation begins. Multi-year, fee-for-service agreements may let teams quickly ask a partner for a material review on a fee-for-service basis via purchase order, which may avoid weeks of contract delays or unpaid work.

6. Give patient groups one front door. Advocacy should quarterback relationships, to prevent patient groups from getting overwhelmed by multiple requests. This creates a single-entry point for medical, commercial, and comms while maintaining compliance.

7. Expect funding scrutiny to follow the path it took with physicians and medical societies. A recent Australian study found no evidence of undue industry influence over patient groups, but it highlighted the need for groups to demonstrate independence, making clear boundaries and non-sole sponsorship critical.

>>Related reading from the discussion: Panelists referenced an Australian study during their conversation about industry funding, scrutiny, and patient groups’ independence. For communicators, this reinforces the importance of understanding these relationships and working with advocacy colleagues to communicate them clearly. Read more about the study and patient advocacy leaders’ perspectives.​

8. Treat a declined partnership as information. A no usually reflects resourcing or priorities, though it can point to past conduct or misaligned values. Ask the group directly to clarify whether the answer is "not now" or "not ever."

9. Ensure stakeholders are informed by patient input and advocacy conversations. Advocacy relationships can be leveraged to inform patient engagement decisions and deepen stakeholders' understanding of patient needs - including investors, regulators, and investigators. Advocacy professionals can facilitate conversations at the right time and with the right people to advance patient focused drug development.

10. Demonstrate business value by publishing and disseminating insights to key decision-makers. Advocacy functions have more access and interactions with advocates. Their deep, trusted relationships with external groups can translate into value beyond their function through the timely dissemination and reporting of insights. Connecting advocacy to the work of other functions can be measured in meaningful ways to counter the “warm, fluffy” perception of the function.

Thank you to our Patient Advocacy & Engagement Roundtable members -- Susan Brisendine, Michele Lentz, Erin Murphy, Jonathan Naylor, and Lauren Walrath -- for bringing their experience and perspectives to this discussion. We look forward to learning more from this roundtable in the months to come!

Miss the event? T2B Pro and Student members can watch the replay⁠.

Lynnea