Joan Finnegan Brooks

Joan Finnegan Brooks

Cystic Fibrosis Advocate Leader
Joan Finnegan Brooks image

Joan Finnegan Brooks consulted for leading biotechnology and pharmaceutical companies, research institutions and patient advocacy groups involved in cystic fibrosis care and research for over 30 years. She served as a trusted strategic advisor to help industry partners integrate patient perspectives into clinical trials, drug development, and marketing initiatives for the cystic fibrosis community.

Joan has in-depth knowledge of cystic fibrosis, current scientific research, specialized CF care center and clinical trial networks. She provided key insights into drug development, clinical trials and marketing programs that complemented and leveraged her clients’ resources.  She developed numerous ‘CF Patient Experience’ profiles, and designed surveys and discussion guides for market research to help clients gather important market data.  Joan directed communication outreach strategies for the CF community, worked with clients to minimize recruitment challenges to patient participation in clinical trials and made recommendations to ensure acceptability of new therapies.

Joan volunteers for the Cystic Fibrosis Foundation and has been involved with the CF community all her life. She was a leader in many national CF Foundation initiatives focused on CF adult issues, clinical trial participation. clinical practice guidelines for patient care, patient engagement and adherence, and quality improvement efforts in specialized CF care centers. Most recently, she co-chaired a national initiative to develop a successful peer-to-peer mentor program for the CF community that virtually (remotely) connects adults with CF, as well as providing peer mentors to parents and family members.  She served on the Protocol Review Committee for the nationwide clinical trials network sponsored by CF Foundation Therapeutics for nearly 10 years.

Joan is a passionate advocate for people with CF and their families.  She meets with representatives and senators at state and federal levels of government to educate and advocate for the CF community’s needs.  She testified before Congress to appeal for increased support for CF research from the NIH and spoke at an FDA Advisory Committee.

Joan spoke at annual North American Cystic Fibrosis Conferences, a BIO Annual Convention and was a faculty member for an intensive training seminar hosted by the Institute for Patient- and Family-Centered Care. She regularly speaks at a Harvard College course. “Stem Cells and Regeneration in the Pathobiology and Treatment of Human Disease”. She was honored and recognized by the national CF Foundation and their Chapter offices for exceptional efforts and achievements throughout the years. Her story has been featured in many publications and websites.

Joan graduated from Brown University with a B.A. in Economics. Prior to establishing her consulting practice, Patient-Focused Market Research, she had a 17-year career with a global financial services company. She worked in investment management, trading and held management positions in product marketing and merger communications. For her CF advocacy and outreach, Joan was recognized in national press releases and publications as the company’s 1998 Volunteer of the Year.

Contact Information

p: 617-312-0931