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.

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

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

scholarly journals My PCR: A Community Driven Approach to Raising Awareness About PCR in LMICs

2016 ◽  
Vol 2 (3_suppl) ◽  
pp. 32s-32s
Author(s):  
Erin Lindsay Schneider ◽  
Pat Garcia-Gonzalez
Keyword(s):  
Conflicts Of Interest ◽  
Residual Disease ◽  
Disease Diagnosis ◽  
Local Context ◽  
Educational Materials ◽  
Advocacy Organizations ◽  
Raising Awareness ◽  
Polymerase Chain ◽  
The Impact ◽  
Educational Information

Abstract 49 Background: There is a significant need to increase awareness among chronic myeloid leukemia (CML) patients and their physicians about the importance of polymerase chain reaction (PCR) testing for disease diagnosis and monitoring. PCR is one of the most sensitive ways to diagnose CML and is one of the most reliable tools for monitoring disease. Many CML patients in LMICs lack access to PCR due to a lack of awareness and/or financial constraints. In 2012, My PCR was launched to address this. Goals: increase patient awareness of the importance of monitoring residual disease increase patient understanding of CML treatment milestones increase patients' involvement in treatment increase community awareness about needs of patients Methods: Led by The Max Foundation, My PCR is a coalition of 56 patient advocacy organizations from 51 countries (mostly LMICs) that uses a collaborative approach to raise awareness among stakeholders. My PCR provides educational information and resources in >25 languages, offers grants to partners to host booths at local and international hematology society conferences, host awareness events that engage physicians, and print educational materials. My PCR uses a website and social media to house resources and promote initiatives. Results: Since 2012, My PCR has: doubled its partnership base; reached over 40,000 patients, caregivers and physicians with educational information/resources, greatly increasing patient and physician understanding of PCR for CML monitoring in LMICs; and facilitated over 70 awareness events and regional meetings, bringing together patients and physicians to strengthen dialogue about CML treatment/monitoring. Next Steps: My PCR will create a PCR Advocacy Toolkit for advocates to adapt to their local context to increase access to PCR. The Toolkit will address how to collaborate with physicians, engage Ministries of Health, and utilize existing avenues for testing. Additionally, there will be an increased focus on measuring the impact of partners' efforts in improving access to PCR testing. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from either author.

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