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International Framework for Cancer Patient Advocacy: Empowering Organizations and Patients to Create a National Call to Action on Cancer.

ABSTRACT: With the rate of cancer and other noncommunicable diseases (NCDs) growing globally, cancer prevention and control efforts are critical internationally. Moreover, since the 2011 United Nations High-Level Meeting on NCDs, the international health and development community has shifted its awareness to include NCDs as a global health priority, especially in developing countries where mortality rates are disproportionately high. Simultaneously, with the dissemination of the World Cancer Declaration and the evolution of cancer control policies, the international cancer community has recognized the value of engaging patients in reducing the global cancer burden. Cancer advocacy programs that involve patients, survivors, and nongovernmental organizations (NGOs) have increasing opportunities for global impact.We developed a framework over 4 years through implementation of two pilot projects. We created a series of trainings and tools to build the capacity of local NGOs and patients to plan and implement a forum for patients with cancer and to create and disseminate a national call to action. The framework was piloted in South Africa from 2009 to 2011 and Japan from 2012 to 2014, and results were measured through postproject surveys completed by members of the collaborative working group and interviews with the in-country partner.The framework is globally relevant and could be adapted and implemented in low- and middle-income countries to amplify patient voices in the policymaking process, increase grassroots mobilization, and improve health systems and infrastructure through addressing patient needs.With the dominant paradigm of global health in developing countries-which has previously focused on HIV/AIDS, maternal and child health, tuberculosis, and malaria-shifting to adapt to the burgeoning NCD burden, effective patient-centered advocacy frameworks are critical to the success of NCD control.

SUBMITTER: Schear RM

PROVIDER: S-EPMC5539871 | biostudies-other | 2015 Dec

REPOSITORIES: biostudies-other

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Project description:Importance:Patient advocacy organizations are nonprofit organizations that represent patients with medical conditions. Although these organizations may increase disease awareness and influence health care policy, reports have suggested financial relationships between organizations and drug, device, and biotechnology companies, which may lead to potential conflicts of interest. The extent of these conflicts has not been explored among patient advocacy organizations in dermatology. Objective:To examine potential financial conflicts of interest and characterize disclosure practices among dermatology patient advocacy organizations. Design, Setting, and Participants:This cross-sectional study of the largest dermatology patient advocacy organizations using the Kaiser Health News database acquired data on total revenue from each organization's Form 990 for the year 2015. Tax forms and annual reports from 2017 were used for 2 organizations that were missing donor information for 2015. Annual reports, websites, and LinkedIn profiles were manually examined to ascertain donations and determine disclosure practices pertaining to financial support and board membership. Main Outcomes and Measures:The amount and minimum proportion of donations attributable to industry sponsorship among organizations as well as the proportion of organizations disclosing (1) industry-sponsored financial support, (2) the amount of industry-derived donations, and (3) current and past relationships between governing board members and industry sponsors. Results:This study identified 24 dermatology patient advocacy organizations with annual revenues that exceeded $500 000. Of these, 5 (21%) had total donations that exceeded $5 million and 4 (17%) reported industry donations that exceeded $500 000. Two organizations (8%) reported having at least 40% of total donations from industry sponsorship. Overall, 17 organizations (71%) reported receiving donations from industry on the annual report or the website and 12 (50%) reported the amount of donations in ranges. None of the organizations reported the exact amount or use of donations. On the basis of annual reports and websites, 3 organizations (13%) reported having a current or former industry executive on the organization's governing board. When this search was replicated using LinkedIn, this figure was at least 54%. Conclusions and Relevance:These findings suggest inconsistent disclosure of industry-derived financial support and board membership that may represent conflicts of interest. Policies that support the transparency and consistency of disclosure practices between industry and patient advocacy organizations appear to be needed to fully characterize the extent of conflicts of interest among patient advocacy organizations in dermatology and maintain trust in these important institutions.

Project description:BackgroundClimate change poses a risk of health catastrophes and must be expeditiously addressed across the health care sector. Physicians are considered trustworthy and are well positioned to discuss climate change with patients. A unified strategy by all U.S. medical societies is essential to effectively mitigate their carbon footprint and address health concerns.MethodsWe conducted a review of the public facing websites of member organizations of the AMA House of Delegates and the AMA, which were scored based on inclusion of content related to climate change in position statements or policies, task forces or committees, patient education materials, practice recommendations and any official society publications. Membership in the Medical Society Consortium on Climate and Health or participation in the organization My Green Doctor were recorded as indicators of a commitment to providing educational resources about mitigation and adaptation to climate change. The availability of a virtual option for annual meetings, as a potential means to reduce the carbon footprint of attendees, was trended from 2021 to 2022.ResultsFifty out of 111 U.S. medical organizations (45%) had at least one metric with a reference to climate change and sixty-one organizations (55%) had no evidence of such website content. Out of 111 websites, only 20% (N = 22) had position statements or policies pertaining to climate change, 11% (N = 12) had committees or task forces dealing with climate change, 8% (N = 9) provided patient education resources on climate change, 21% (N = 23) included green practice recommendations and 45% (N = 50) had an article in an official society publication addressing climate change. Only 14% (N = 15) were listed as member societies of the Medical Consortium on Climate Change and 2% (N = 2) were participating organizations with My Green Doctor.ConclusionsViewed through the lens of medical society websites, there was a wide variation in efforts to address climate change. The high performing organizations can serve as a guide for other societies to help mitigate and adapt to the climate emergency.

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International Framework for Cancer Patient Advocacy: Empowering Organizations and Patients to Create a National Call to Action on Cancer.

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