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​COMM CONVO: RETHINKING WHAT WE ASK OF PATIENTS

​Communicators regularly invite patients to share personal experiences for corporate websites, presentations, employee events, campaigns, focus groups, and advisory boards. These requests are often well intentioned, but they can still rely on an unspoken assumption that patients should be willing to contribute because the organization is working on their disease. As patients and advocates increasingly expect fair compensation, meaningful influence, and a clearer answer to “what’s in it for me right now?”, communicators need to look beyond the value a patient’s participation creates for the company and consider the terms of the exchange itself. This Comm Convo will examine how communicators can challenge one-sided asks, advocate for more equitable participation with internal partners and clients, and recognize when patient involvement should be shaped in partnership with—or led by—patient advocacy experts. It will establish a shared foundation for forthcoming T2B Patient Advocacy & Engagement Roundtable programming, which will go deeper into the practices, policies, and models that support meaningful engagement.

​WHY ATTEND

• ​Recognize when a well-intentioned request treats a patient primarily as content, validation, or inspiration rather than a collaborator.

• ​Evaluate the immediate value patients receive from participating, including compensation, clarity, influence, and follow-through, and how communicators can make the case internally for budgets and timelines that support fair exchange.

• ​Develop a stronger framework for patient invitations by asking more thoughtful questions, including what decisions patients can shape and how their input will be used.

• ​Cultivate more deliberate partnerships with patient advocacy colleagues, including a clearer understanding of when communications should lead, support, or step back.

​FEATURED SPEAKERS

• ​Kathryn Brown, SVP, Chief Communications & Marketing Officer, Cystic Fibrosis Foundation

• ​Jennifer Mefford, Chief Partnerships Officer, Pulmonary Fibrosis Foundation

• ​Louise Vetter, President & CEO, Lupus Foundation of America

​PANEL MODERATOR

• ​Erin Murphy, Global Strategy & Partnerships and Communications, Alagille Syndrome Alliance

​MEET OUR SPEAKERS

​Kathryn Brown, SVP, Chief Communications & Marketing Officer, Cystic Fibrosis Foundation

​Kathryn Brown is Chief Communications & Marketing Officer and Senior Vice President at the Cystic Fibrosis Foundation, where she leads communications and marketing strategy to advance the Foundation’s mission to cure cystic fibrosis and ensure that every person with CF can live a long, fulfilling life. She partners across research, clinical care, fundraising, and community engagement to strengthen connections with the CF community and accelerate progress toward that mission.

​Before the CF Foundation, Kathryn led communications and marketing at the Howard Hughes Medical Institute, a leading biomedical research institution, and The Conservation Fund, an environmental and economic nonprofit. Prior to joining the nonprofit sector, she worked as an award-winning science journalist.

​Kathryn currently serves on the board of Addgene, a nonprofit dedicated to advancing scientific discovery through access to research resources. She holds a B.A. in journalism and psychology from the University of Missouri.

​Jennifer Mefford, Chief Partnerships Officer, Pulmonary Fibrosis Foundation

​Jennifer Mefford is Chief Partnerships Officer at the Pulmonary Fibrosis Foundation (PFF), where she leads corporate strategy, industry alliances, and external partnerships. Over more than 13 years with the PFF, she has worked at the intersection of patient advocacy, research, and industry to build partnerships that advance scientific discovery, clinical research, education, and better outcomes for people affected by pulmonary fibrosis.

​Jennifer works closely with pharmaceutical and biotechnology companies to advance meaningful patient engagement throughout drug development and build collaborations that move science forward. She leads industry engagement with the PFF Registry, the PFF Corporate Committee, and PROLIFIC, an industry-supported biomarker consortium.

​Jennifer holds an MA in Arts Administration and Policy from the School of the Art Institute of Chicago and a BA from California State University, Northridge.

​Louise Vetter, President & CEO, Lupus Foundation of America

​Louise Vetter is a mission-driven leader with more than 25 years of experience raising funds and growing health-focused nonprofits to increase care and accelerate therapeutic solutions for patients. She joins the Lupus Foundation of America after a fifteen-year tenure as President & CEO of the Huntington’s Disease Society of America (HDSA), the largest public non-profit devoted to the fight against Huntington’s disease (HD), a rare neurodegenerative condition. At HDSA, she led the expansion of the Society’s impact with new programs to remove barriers to accessing support and clinical resources, improve physician understanding, and support scientific innovation to bring new treatments to HD families.

​Before HDSA, Louise served as President & CEO of the American Lung Association of New York where she oversaw statewide advocacy, education and research programs on a variety of lung health issues, including asthma, environmental health and tobacco control. Notably, she led the American Lung Association’s response to the air quality crisis following the 9-11 attack in NYC. Prior to her transition to the nonprofit field, she worked in the Healthcare practice at Fleishman Hillard Communications conducting media relations and public awareness campaigns, as well as crisis communication support to clients in the biotech and pharmaceutical industries.

​Ms. Vetter currently serves on the Board of the National Health Council and is an Emeritus Board Member of the American Brain Coalition.

​Erin Murphy, Global Strategy & Partnerships and Communications, Alagille Syndrome Alliance (Moderator)

​Erin Murphy is a corporate affairs executive with two decades of experience shaping communications and advocacy strategies across the biopharmaceutical industry. She has built and led highimpact programs that help organizations strengthen their reputations, engage meaningfully with patient communities, and advance missions centered on improving lives.

​She currently leads global strategy and partnerships for the Alagille Syndrome Alliance. Prior to ALGSA, Erin was head of corporate affairs at Mirum Pharmaceuticals, where she built and oversaw corporate communications and patient advocacy. Before Mirum, she held a similar role at Dermira. Earlier experience included communications roles at Pharmacyclics (now AbbVie) and Onyx Pharmaceuticals.

​She has been recognized for her industry contributions through awards including “Marketer of the Year” by PM360, “Women of Distinction” by MM+M, “ELITE 100” by PM360, and “Rare Champion of Hope” by Global Genes.

​Erin received a bachelor’s degree, summa cum laude, from Arizona State University.