Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest

2017 ◽  
Vol 177 (3) ◽  
pp. 344 ◽  
Author(s):  
Susannah L. Rose ◽  
Janelle Highland ◽  
Matthew T. Karafa ◽  
Steven Joffe
Keyword(s):  
Conflicts Of Interest ◽  
Patient Advocacy ◽  
Industry Funding ◽  
Advocacy Organizations

Conflicts of Interest in Dermatology Patient Advocacy Organizations—Reply

2019 ◽  
Vol 155 (8) ◽  
pp. 982
Author(s):  
Sean Singer ◽  
David G. Li ◽  
Arash Mostaghimi
Keyword(s):  
Conflicts Of Interest ◽  
Patient Advocacy ◽  
Advocacy Organizations

Analysis of Potential Conflicts of Interest among Otolaryngologic Patient Advocacy Organizations in 2016

2019 ◽  
Vol 161 (6) ◽  
pp. 967-969
Author(s):  
Neil S. Kondamuri ◽  
Vinay K. Rathi ◽  
Matthew R. Naunheim ◽  
Rosh V. Sethi ◽  
Ashley L. Miller ◽  
...  
Keyword(s):  
Research Funding ◽  
Conflicts Of Interest ◽  
Patient Advocacy ◽  
Cross Sectional ◽  
Advocacy Organizations ◽  
Policy Makers ◽  
Health News ◽  
Financial Conflicts Of Interest ◽  
Sectional Analysis ◽  
Medical Drug

Patient advocacy organizations (PAOs) are nonprofits dedicated to benefiting patients and their families through activities such as education/counseling and research funding. Although medical drug/device companies may serve as important partners, industry donations may bias the efforts of PAOs. We conducted a retrospective cross-sectional analysis of the Kaiser Health News nonprofit database to identify and characterize otolaryngologic PAOs (n = 32) active in 2016. Among these PAOs, half (n = 16, 50.0%) focused on otologic diseases, and mean total annual revenue was $3.1 million. Among the 15 PAOs (46.9%) with publicly available donor lists, 10 (66.7%) received donations from industry. Few PAOs publicly reported the total amount donated by industry (n = 3, 9.4%) or published policies for mitigating potential financial conflicts of interest with donors (n = 3, 9.4%). Requiring drug and device companies to publicly report donations to PAOs may help patients, providers, and policy makers to better understand advocacy by these influential stakeholders.

scholarly journals Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust, and Trustworthiness

2013 ◽  
Vol 41 (3) ◽  
pp. 680-687 ◽  
Author(s):  
Susannah L. Rose
Keyword(s):  
Mental Illness ◽  
Conflicts Of Interest ◽  
Public Awareness ◽  
Treatment Options ◽  
Heart Association ◽  
Patient Advocacy ◽  
Medical Conditions ◽  
Cancer Society ◽  
Advocacy Organizations ◽  
National Alliance

Patient advocacy organizations (PAOs) provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that (a) concern themselves with medical conditions or potential medical conditions and (b) have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions of people with physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease.

scholarly journals Industry Funding of Cancer Patient Advocacy Organizations

2016 ◽  
Vol 91 (11) ◽  
pp. 1668-1670 ◽  
Author(s):  
Matthew V. Abola ◽  
Vinay Prasad
Keyword(s):  
Cancer Patient ◽  
Patient Advocacy ◽  
Industry Funding ◽  
Advocacy Organizations

scholarly journals When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Orna Ehrlich ◽  
Laura Wingate ◽  
Caren Heller ◽  
Inmaculada de Melo-Martin
Keyword(s):  
Conflicts Of Interest ◽  
Ethics Committees ◽  
Patient Advocacy ◽  
Ethics Committee ◽  
Main Body ◽  
Advocacy Organizations ◽  
Academic Context ◽  
Novel Approach ◽  
Financial Conflicts Of Interest ◽  
The Creation

Abstract Background Much like academic-industry partnerships, industry financial support of patient advocacy organizations (PAOs) has become very common in recent years. While financial conflicts of interest (FCOI) between PAOs and industry have received more attention in recent years, robust efforts to mitigate these conflicts are still limited. Main body The authors outline the possible benefits and ethical concerns that can result from financial interactions between biomedical companies and PAOs. They argue that the use of novel strategies, such as the creation of a standing ethics committee, could be helpful in managing FCOIs and ensuring the warranted trust of PAO’s constituents. Although ethics committees to address FCOIs are common in the academic context, its use by PAOs is still limited. The authors conclude by describing the process of development and implementation of such an ethics committee at the Crohn’s & Colitis Foundation. Conclusions While collaborations with industry can result in conflicts of interest, PAOs can develop strategies to address those conflicts. One such strategy is the creation of a standing independent ethics committee to guide PAOs on new and/or existing programs and protocols as they pertain to their industry relationships.

scholarly journals Conflicts of Interest for Patient-Advocacy Organizations

2017 ◽  
Vol 376 (9) ◽  
pp. 880-885 ◽  
Author(s):  
Matthew S. McCoy ◽  
Michael Carniol ◽  
Katherine Chockley ◽  
John W. Urwin ◽  
Ezekiel J. Emanuel ◽  
...  
Keyword(s):  
Conflicts Of Interest ◽  
Patient Advocacy ◽  
Advocacy Organizations
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