The National Emphysema/COPD Association

Although COPD is the third leading cause of death by disease in the US today, in 2007 patients and physicians were uninformed about the disease. 46% of primary care physicians were unaware of any COPD guidelines before the release of the National Survey to Identify Unmet Medical Needs Among COPD Patients.

The National Emphysema/COPD Association (NECA), a patient advocacy organization, wished to obtain funding for a comprehensive study of the unmet needs of COPD patients, their caregivers, and their physicians. At the time, there was well-documented, ongoing confusion about the diagnosis of COPD and its treatment choices. Beresford Research’s recommended multi-faceted study won the funding from Novartis and helped increase awareness of the diagnosis among patients and providers.

Beresford Research designed a sophisticated weave of research methodology, including focus groups, three surveys, and an innovative outreach program to access COPD patients, pulmonologists, primary care physicians and respiratory therapists. To increase awareness of the diagnosis among patients and providers, we tapped nine different participant sources and used in-person, online and print surveys with over 1,900 people closely associated with the disease.

Beresford Research wrote the detailed proposal on NECA’s behalf. Working with Innovative Health Solutions (Brookline, MA), we conducted focus groups among patients, caregivers and physicians (both pulmonologists and primary care physicians) in two US locations. The knowledge we gained from these focus groups guided our development of the survey instruments, which we distributed in print and over the Web to all three groups.

Additional patient and caregiver printed surveys were distributed by regional Better Breather Clubs throughout the US, by a home oxygen delivery company, and at local COPD patient meetings. The focus group findings were presented at ISPOR’s 13th Annual International Meeting, garnering positive awareness and promotions for NECA and Novartis. Over 1,000 COPD patients, 500 caregivers and nearly 400 physicians responded to the surveys, providing a rich database for NECA and Novartis to exploit.

The research study was published in BMC Pulmonary Medicine, “National Emphysema/COPD Association Survey.” Julen Beresford (sic) was one of the study’s authors.


“Beresford Research serves as NECA’s research arm by creatively combining qualitative and quantitative research techniques. Beresford employs creative and cost-effective solutions and then consistently delivers, on time, with top-quality attention and care.”

Barbara Rogers, President, National Emphysema/COPD Association (NECA)