@article{cd34dce92092487fb334505f85d77e3b,
title = "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{\textquoteright}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, quantitative research, social science, survey",
author = "Caroline Horrow and Pacyna, {Joel E.} and Carol Cosenza and Sharp, {Richard R.}",
note = "Funding Information: Frequencies and percentages of pediatric neurologists reporting interactions with DAOs ( n = 230). N (%) In the last 5 years, have you suggested that patients or their parents look into a DAO? 202(90.6) In the last 5 years, have you discussed a DAO with any of your patients or their parents? 199(89.6) In the last 5 years, have you given any patients or their parents educational material from a DAO? 183(82.8) In the last 12 months, have you received a DAO{\textquoteright}s newsletter in the mail or by email? 177(77.6) In the last 12 months, have you visited a DAO{\textquoteright}s website? 170(74.6) In the last 5 years, have you had information from a DAO available in your office for patients or their parents? 155(69.8) In the last 5 years, have you attended a DAO-sponsored meeting or conference? 108 (48.4) Have you ever served on a DAO medical or scientific advisory board? 77 (33.5) In the last 5 years, have you attended a DAO support group? 75(33.6) In the last 5 years, have you delivered a talk at a DAO event? 73(32.7) In the last 5 years, have you received CME or CEU credits through a DAO-sponsored activity?* 66 (29.9) In the last 5 years, have you consulted for a DAO? 65(28.9) In the last 5 years, have you collaborated with a DAO to recruit research participants? 42(18.8) In the last 5 years, have you participated in a DAO-sponsored online webinar?* 36 (16.2) In the last 5 years, have you provided scientific or clinical expertise to a DAO for a research study? 34(15.2) In the last 5 years, have you received research funding from a DAO? 33(14.9) In the last 12 months, have you connected with a DAO using social media (such as Facebook, Twitter, or blogs)* 32(14.2) In the last 5 years, have you written for a DAO newsletter or website?* 31(13.9) In the last 5 years, have you collaborated with a DAO on the design of a research study? 22(9.9) In the last 5 years, have you reviewed a research grant for a DAO? 22(9.9) In the last 5 years, have you coauthored a journal article with someone from a DAO? 20(9.0) In the last 5 years, have you co-presented a paper or poster with someone from a DAO? 15(6.7) In the last 5 years, have you received a training grant or fellowship support from a DAO? 9(4.1) Have you founded or co-founded a DAO?* 4 (1.7) Funding Information: 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. 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. Publisher Copyright: {\textcopyright} 2019, {\textcopyright} 2019 Taylor & Francis Group, LLC.",
year = "2019",
month = oct,
day = "2",
doi = "10.1080/23294515.2019.1652213",
language = "English (US)",
volume = "10",
pages = "222--230",
journal = "AJOB Empirical Bioethics",
issn = "2329-4515",
publisher = "Taylor and Francis Ltd.",
number = "4",
}