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

2013 ◽  
Vol 41 (3) ◽  
pp. 680-687 ◽  
Author(s):  
Susannah L. Rose

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.

2019 ◽  
Vol 155 (8) ◽  
pp. 982
Author(s):  
Sean Singer ◽  
David G. Li ◽  
Arash Mostaghimi

2019 ◽  
Vol 161 (6) ◽  
pp. 967-969
Author(s):  
Neil S. Kondamuri ◽  
Vinay K. Rathi ◽  
Matthew R. Naunheim ◽  
Rosh V. Sethi ◽  
Ashley L. Miller ◽  
...  

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.


Author(s):  
Seoirse Smith ◽  
Laurie M. Savage

Patient advocacy groups grew out of a need to provide support to and education for patients and to fuel research to better understand diseases and their diagnosis, and treatment options for patients. These organizations have become integral partners with the medical community in developing healthcare policy, patient education, patient support, and scientific research. The Ankylosing Spondylitis International Federation (ASIF) of patient advocacy and support groups and the Spondylitis Association of America (SAA) are two of the leading patient advocacy organizations for millions of people affected by axial spondyloarthritis, increasing awareness of the disease, disseminating knowledge, sponsoring research, and influencing public policy.


2017 ◽  
Vol 177 (3) ◽  
pp. 344 ◽  
Author(s):  
Susannah L. Rose ◽  
Janelle Highland ◽  
Matthew T. Karafa ◽  
Steven Joffe

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Orna Ehrlich ◽  
Laura Wingate ◽  
Caren Heller ◽  
Inmaculada de Melo-Martin

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.


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

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