Deborah Collyar

President, Patient Advocates In Research (PAIR)

Why Plain Language Summaries?

“Unfortunately, many health care systems are not set up for patients, causing them to have to coordinate their own care and decisions without proper training or context. Plain language summaries are critical, when written with health literacy principles, to provide clear information that people can use to make decisions that work for their particular situations.”

Biography

Deborah Collyar has been a leader in patient engagement and advocacy since her first cancer diagnosis. She utilizes her business leadership, IT, and communication skills to bridge research gaps between scientists, medical providers, and patients. Deborah founded the Patient Advocates in Research (PAIR) international network in 1996, “where research meets reality” and consults with the health and medical research communities.

Deborah has infused hundreds of patient advocates into research programs while creating a variety of trainings and delivering innovative ways to gather input from thousands of patients. Her work encompasses many diseases, programs and policies at grassroots, national and international levels, and emphasizes patient issues throughout early development and protocols, recruitment, retention, and results reporting. Deborah also serves as a consultant to Health Literacy Media (HLM) in their Clearly Communicating Clinical Trials (C3T) program.

Deborah encourages innovation in clinical trials and healthcare delivery. She has been a key member in pivotal projects with the US NIH, NCI Clinical Trials Network (NCTN), ASCO, AACR, Antibacterial Resistance Leadership Group (ARLG), Clinical Trials Transformation Initiative (CTTI), Center for Medical Technology Policy (CMTP), DIA, Institute of Clinical and Economic Review (ICER), Metastatic Breast Cancer Alliance (MBCA), Multi-Regional Clinical Trials Center (MRCT), Oncology Research Information Exchange Network (ORIEN), Society for Immunotherapy in Cancer (SITC), academic institutions, companies, and international consortia. She is a speaker, blogger, author, grant team member, trainer, and faculty at professional workshops like the Vail Methods in Clinical Research and the SITC Winter School, and presents the patient perspective at professional meetings. She and her husband have survived 3+ cancers, and they work with multiple communities and patients