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Through our work for a breadth of health care systems, patient advocacy groups, medical associations, insurance providers, physicians’ offices, and government entities, we constantly have our finger on the pulse of the complex opinions that surround the rapidly changing world of health care.


Using Innovation and Understanding to Explore the Mind of the Patient

CysticThe Cystic Fibrosis Foundation (CFF) is a longtime partner, collaborating with Edge on numerous studies that examine how the Foundation touches, messages to, and engages its wide range of constituents and supporters: CF patients, their families, health care professionals, local chapters, and donors.

Due in part to the Foundation’s groundbreaking work in drug discovery and development, many people with the disease can now expect to live into their 30s, 40s, and beyond. As the number of adult patients grows, the Foundation wants to ensure that it meets the unique needs of this population. Primary research with adults at different life stages was needed, but conducting it successfully presented some interesting challenges:

  • HIPAA laws prevent us from contacting CF patients directly. So CFF and Edge crafted a grassroots, multi-modal outreach strategy that allowed patients to opt into the study through various websites, social media outlets, list serves, and referral emails.
  • Infection control guidelines mean that CF patients cannot be in the same room, but we knew it was important to conduct focus groups where they could share experiences and bounce ideas off one another. So we held a series of virtual focus groups, using our online platform and webcams, and ensuring a more intimate experience where patients could talk to one another face-to-face.
  • Many of the topics covered required sensitivity and understanding on the part of our RIVA trained moderators. We used a range of techniques to ensure that participants felt safe and could share their opinions with courage, authenticity, and dignity. The results of this study are enlightening, poignant, and will inform outreach and communications strategy moving forward.

You have had a fundamental influence on our strategic thinking, and we now have a new appreciation for the two-way conversation we have with our audiences. I have been impressed with how quickly you've immersed yourselves in our culture and gotten up to speed on our challenges. Overall, the research has been a very productive use of our dollars.