Advocacy organizations, industry funding, and conflicts of interest _ medical devices and equipment _ jama internal medicine _ the jama network

Importance Patient advocacy organizations (PAOs) are influential health care stakeholders that provide direct counseling and education for patients, engage in policy advocacy, and shape research agendas. Data recovery raid 0 Many PAOs report having financial relationships with for-profit industry, yet little is known about the nature of these relationships.

Design, Setting, and Participants A survey was conducted from September 1, 2013, to June 30, 2014, of a nationally representative random sample of 439 PAO leaders, representing 5.6% of 7865 PAOs identified in the United States. Data recovery tools Survey questions addressed the nature of their activities, their financial relationships with industry, and the perceived effectiveness of their conflict of interest policies.

Main Outcomes and Measures Amount and sources of revenue as well as organizational experiences with and policies regarding financial conflict of interest.

Results Of the 439 surveys mailed to PAO leaders, 289 (65.8%) were returned with at least 80% of the questions answered. Database programming languages The PAOs varied widely in terms of size, funding, activities, and disease focus. Super 8 database The median total revenue among responding organizations was $299 140 (interquartile range, $70 000-$1 200 000). 5 databases A total of 165 of 245 PAOs (67.3%) reported receiving industry funding, with 19 of 160 PAOs (11.9%) receiving more than half of their funding from industry. H data recovery registration code Among the subset of PAOs that received industry funding, the median amount was $50 000 (interquartile range, $15 000-$200 000); the median proportion of industry support derived from the pharmaceutical, device, and/or biotechnology sectors was 45% (interquartile range, 0%-100%). Database link A total of 220 of 269 respondents (81.8%) indicated that conflicts of interest are very or moderately relevant to PAOs, and 94 of 171 (55.0%) believed that their organizations’ conflict of interest policies were very good. Database google A total of 22 of 285 PAO leaders (7.7%) perceived pressure to conform their positions to the interests of corporate donors.

Conclusions and Relevance Patient advocacy organizations engage in wide-ranging health activities.


Database update Although most PAOs receive modest funding from industry, a minority receive substantial industry support, raising added concerns about independence. Data recovery news Many respondents report a need to improve their conflict of interest policies to help maintain public trust.

Patient advocacy organizations (PAOs), such as the American Cancer Society, the American Heart Association, and the National Organization of Rare Disorders, are influential stakeholders in health and health care. Data recovery austin 1 , 2 In addition to intervening at the individual level, many PAOs fund or conduct medical and health services research, 3 – 5 influence national policy, and play key roles in allocation decisions made by legislatures and government agencies. Data recovery micro sd card 2 , 6 – 8 Patient advocacy organizations need to secure financial support, which may come from many sources, including for-profit entities. Database relationship diagram However, relationships between PAOs and industry might influence PAOs’ activities in ways that might not align with the interests of the constituencies they represent. Data recovery services near me 9 – 15 There is increasing evidence that financial relationships can create bias in medical research and physicians, 16 , 17 and PAOs may be subject to the same concerns.

Despite the increasing role of PAOs in the biomedical ecosystem, few systematic investigations have focused on these health policy actors. Database worksheet Published studies have relied on industry disclosures and have been limited in scope. Database constraints 18 , 19 Furthermore, PAOs do not routinely and publicly disclose all their sources of funding; this information is often not included on their websites, in their annual reports, or on their 990 tax forms. Database vault 18 – 21 Given the dearth of information about PAOs’ funding sources, we conducted a nationwide survey of leaders of PAOs in the United States to assess the nature of industry funding and partnerships among PAOs.

Closely following the method used by Armstrong et al, 22 who investigated the effect of PAOs on media coverage of diseases, we used Gale’s Encyclopedia of Associations: National Organizations of the US 23 to identify eligible organizations. Qmobile data recovery software These databases contain a list and description of all for-profit and nonprofit organizations operating in the United States. Tally erp 9 data recovery software We used 345 search terms to create a list of advocacy groups (eTable 1 in the Supplement). 7 databases in 7 weeks If new terms arose during the search, we added them to the list.

To ensure that our list was complete, we also searched the National Organization for Rare Disorders, 24 the United States Department of Health and Human Services Directory of Health Organizations, 25 and GuideStar. 3 database models 26 These sources provided additional terms which we then iteratively used to search the Gale Databases; we judged the list complete when no new organizations were identified. Database programmer salary Specific inclusion and exclusion criteria were applied to each organization (eTable 2 in the Supplement), resulting in 7865 eligible PAOs for inclusion in the survey.

When leadership contact information was not readily available from organizational websites, additional resources, such as GuideStar and LexisNexis, 27 were used to identify organizational leaders. Database developer salary When necessary, contact information was verified via telephone.

Data collection occurred between September 1, 2013, and June 30, 2014. Data recovery agent Surveys were sent in 3 waves. Data recovery usb flash drive Before each mailing, study staff sent an email that alerted recipients that they would be receiving the survey in the mail, provided a link to an online version of the survey, and requested alternative contact information if the individual had received the email in error. Data recovery windows The first hard copy mailing was sent via an express shipping service. Database definition This mailing also included a $25 gift card, an invitation letter describing the study, and a prestamped return envelope.

After each round of mailing, study staff (S.L.R. Data recovery definition and J.H.) telephoned nonresponding organizations. Database or database Returned surveys were reviewed to determine the degree of completion. Data recovery software windows We used confidential, as opposed to anonymous, survey methods to allow for follow-up of nonresponders and queries regarding missing or ambiguous responses. Cost of data recovery The data collected were entered into a separate REDCap 28 database by trained personnel from the Survey Data and Management Core. Database first entity framework Ten percent of all data entered were checked for accuracy to reduce the likelihood of data entry errors. Data recovery iphone 5 The Dana-Farber Cancer Institute and Cleveland Clinic Institutional Review Boards deemed the study exempt from the requirement for human participants research approval.

Patient advocacy organizations play powerful roles in health policy, public education, and research, yet the nature and implications of their relationships with industry have received little systematic study. Raid 0 data recovery We therefore surveyed leaders of PAOs about their organizational activities and industry funding. 7 data recovery serial key We found that most PAOs are small, as measured by their annual revenues, number of employees, and size of membership. Database modeling In addition, most leaders of PAOs believe that industry conflicts of interest are relevant to PAOs but acknowledge that their policies need to be strengthened.

Although most organizations reported receiving modest support from industry, 11.9% received more than half of their revenue from for-profit companies during the last complete fiscal year. A database record is an entry that contains The largest proportion of industry funding was derived from the pharmaceutical, device, and biotechnology sector (median, 45%). Java database Such dependence on the financial support of companies whose interests may not always align with those of the organizations’ constituents has important implications for PAOs. Easeus data recovery 9 serial 21 Consistent with this concern, the National Alliance on Mental Illness, 15 the American Diabetes Association, 29 the American Pain Foundation, 30 and other PAOs have been the focus of media investigations regarding their ties to industry and the integrity of their activities. Iphone 5 data recovery software free Furthermore, that 8% of respondents reported pressure to conform their organizations’ positions to the interests of industry funders is of concern. Database partitioning How this pressure occurs and how to address it merits further study.

This study has several limitations. Database gif First, despite the high response rate, there is a potential for response bias. Database project ideas The PAOs with the most extensive industry ties may not have responded, or PAOs without industry ties may have considered the survey irrelevant. Iphone 5 data recovery without backup Second, such surveys are subject to social desirability bias and respondents’ concerns about confidentiality; however, these potential biases were minimized by using survey identification codes and by speaking directly with respondents who expressed such concerns. Bplan data recovery Third, this study is based on self-report; it does not directly examine funding sources or behaviors. Data recovery boston ma Finally, despite the comprehensive nature of our sampling strategy, we may have failed to identify some PAOs, which limits generalizability. Ipad 2 data recovery Nevertheless, the study includes a high response from a wide-ranging group of PAOs, representing the largest and most representative sample frame to date, to our knowledge. Data recovery company Furthermore, respondents’ seniority and experience permit confidence in the accuracy and insight of their responses.

This study advances our understanding of what PAOs do, how they are funded, and their policies regarding financial relationships with industry. Data recovery network drive Although the amounts and proportions of financial support from industry are modest, the pervasive nature of industry support suggests the need for robust public debate about how to ensure that PAOs serve the interests of their constituencies. Data recovery yelp In addition, although many PAOs are small (ie, the median revenue among organizations that responded to our survey was $299 140), their large numbers and credibility with policymakers and the public likely give even small PAOs extensive influence in specific disease areas. Database join table At the other end of the spectrum, large PAOs that receive considerable for-profit support and have sophisticated public relations and government affairs departments likely have a substantial effect on policies relevant to their industry sponsors.

Greater transparency is a first step to helping PAOs maintain independence. Google database To achieve this goal, PAOs should add detailed information about industry funding on their websites, and pharmaceutical, device, and biotechnology companies should be required to disclose payments to PAOs on the federal government’s Open Payments website. Database quizlet 31 In addition, more robust conflict of interest policies and practices, the development of consensus standards within the PAO community regarding relations with industry, and disengaging entirely from industry support also merit consideration. Database synonym Patient advocacy organizations might consider blinding their leaders to the sources of for-profit funding. Database management jobs 21 , 32 However, this position is likely impractical and would diminish transparency.

Corresponding Author: Susannah L. Iphone 6 data recovery free Rose, PhD, Office of Patient Experience, Department of Bioethics, Cleveland Clinic, 9500 Euclid Ave, Mail Code JJ60, Cleveland, OH 44195 ( roses2@ccf.org).

Author Contributions: Dr Rose had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Conflict of Interest Disclosures: Dr Joffe reported serving as a paid member of a data monitoring committee for Genzyme Sanofi until November 2012. Data recovery ubuntu No other conflicts were reported.

Role of the Funder/Sponsor: The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: Michael Kattan, PhD, Cleveland Clinic, reviewed the data and analysis; he was not compensated for his contribution. Database diagram tool Mary Beth Mercer, MPH, Cleveland Clinic, provided insights on survey development; she was not compensated for her contribution. Database field types Glen Taksler, PhD, Cleveland Clinic, provided comments on this manuscript; he was not compensated for his contribution. Data recovery best buy Ariane Mitchum, MA, Cleveland Clinic, assisted with preparation of the manuscript; she was not compensated for her contribution. Raid 5 data recovery We also thank the Survey and Data Management Core at the Dana-Farber Cancer Institute, Boston, Massachusetts. Database administrator salary nyc The Dana-Farber Cancer Institute is supported in part by the National Institutes of Health (NIH) through a National Cancer Institute Cancer Center support grant (5 P30 CA06516).

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