Examining Physician Interactions with Disease Advocacy Organizations

Abstract

Disease advocacy organizations (DAOs) have traditionally focused on raising awareness of rare diseases, providing educational resources to patients, and supporting patients and families. Previous research has described how scientists collaborate with DAOs, but few empirical data are available regarding the extent to which physicians interact with DAOs and how those interactions impact patient care. We conducted a national survey of 230 board-certified pediatric neurologists to assess their engagement with DAOs and their beliefs about the impact of DAOs on patient care. In that context, we evaluated a set of 24 items describing interactions between physicians and DAOs. Exploratory factor analysis produced a 19-item model capturing four types of physician–DAO engagement: (1) accessing or distributing DAO-produced materials (6 items, alpha = 0.80); (2) consulting on DAO activities (5 items, alpha = 0.81); (3) collaborating with DAOs on research activities (6 items, alpha = 0.80); and (4) co-producing scholarly materials with DAOs (2 items, alpha = 0.80). Our data indicate that physicians engage with DAOs in more frequent and diverse ways than has been previously reported. Almost all physicians in our sample had interacted directly with a DAO in some way, from low-effort activities such as visiting a DAO’s website to deeper forms of engagement including coauthoring journal articles. These findings may provide a framework for bioethicists to characterize the nature and extent of physician interactions with advocacy organizations, which is critical for evaluating the ethical implications of physician–DAO relationships.

Keywords:

• Bioethics
• survey
• quantitative research
• social science

Acknowledgments

The authors thank Amy Jo Marcano, David Landy, and Mary Ellen Colten for their advice on the construction of our sample and for their input on early versions of the survey. The authors also thank Christina Nyquist for her assistance with data cleaning.

Ethical approval

This study was approved by the institutional review boards at Mayo Clinic.

Conflicts of interest

None disclosed.

Additional information

Funding

This project was supported by the National Human Genome Research Institute under grant P50 HG003390 (Center for Genetic Research Ethics and Law) and the Center for Individualized Medicine at Mayo Clinic.

Notes on contributors

Caroline Horrow

Caroline Horrow participated in data cleaning, planned and conducted data analysis, and drafted the initial version of the article. Joel Pacyna contributed to survey design, fielding, and analysis. Carol Cosenza contributed to survey design and oversaw survey fielding, data entry, and data cleaning. Richard Sharp conceived and designed the research, oversaw data collection and analysis, and drafted parts of the article. All authors revised, reviewed, and approved the final version of the article.