Dataset Information

Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

ABSTRACT:

Background

There is little guidance regarding how to disclose researchers' financial interests to potential research participants.

Objective

To determine what potential research participants want to know about financial interests, their capacity to understand disclosed information and its implications, and the reactions of potential research participants to a proposed disclosure statement.

Design and participants

Sixteen focus groups in 3 cities, including 6 groups of healthy adults, 6 groups of adults with mild chronic illness, 1 group of parents of healthy children, 1 group of parents of children with leukemia or brain tumor, 1 group of adults with heart failure, and 1 group of adults with cancer.

Approach

Focus group discussions covered a range of topics including financial relationships in clinical research, whether people should be told about them, and how they should be told. Audio-recordings of focus groups were transcribed, verified, and coded for analysis.

Results

Participants wanted to know about financial interests, whether or not those interests would affect their participation. However, they varied in their desire and ability to understand the nature and implications of financial interests. Whether disclosure was deemed important depended upon the risk of the research. Trust in clinicians was also related to views regarding disclosure. If given the opportunity to ask questions during the consent process, some participants would not have known what to ask; however, after the focus group sessions, participants could identify information they would want to know.

Conclusions

Financial interests are important to potential research participants, but obstacles to effective disclosure exist.

SUBMITTER: Weinfurt KP

PROVIDER: S-EPMC1831594 | biostudies-literature | 2006 Sep

REPOSITORIES: biostudies-literature

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Publications

Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

Weinfurt Kevin P KP Friedman Joëlle Y JY Allsbrook Jennifer S JS Dinan Michaela A MA Hall Mark A MA Sugarman Jeremy J

Journal of general internal medicine 20060901 9

<h4>Background</h4>There is little guidance regarding how to disclose researchers' financial interests to potential research participants.<h4>Objective</h4>To determine what potential research participants want to know about financial interests, their capacity to understand disclosed information and its implications, and the reactions of potential research participants to a proposed disclosure statement.<h4>Design and participants</h4>Sixteen focus groups in 3 cities, including 6 groups of healt ...[more]

PMID: 16918732

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Project description:BackgroundSystematic reviews are increasingly used to inform health policy-making. The conflicts of interest (COI) of the authors of systematic reviews may bias their results and influence their conclusions. This may in turn lead to misguided public policies and systems level decisions. In order to mitigate the adverse impact of COI, scientific journals require authors to disclose their COIs. The objective of this study was to assess the frequency and different types of COI that authors of systematic reviews on health policy and systems research (HSPR) report.MethodsWe conducted a cross sectional survey. We searched the Health Systems Evidence (HSE) database of McMaster Health Forum for systematic reviews published in 2015. We extracted information regarding the characteristics of the systematic reviews and the associated COI disclosures. We conducted descriptive analyses.ResultsEighty percent of systematic reviews included authors' COI disclosures. Of the 160 systematic reviews that included COI disclosures, 15% had at least one author reporting at least one type of COI. The two most frequently reported types of COI were individual financial COI and individual scholarly COI (11% and 4% respectively). Institutional COIs were less commonly reported than individual COIs (3% and 15% respectively) and non-financial COIs were less commonly reported than financial COIs (6% and 14% respectively). Only one systematic review reported the COI disclosure by editors, and none reported disclosure by peer reviewers. All COI disclosures were in the form of a narrative statement in the main document and none in an online document.ConclusionA fifth of systematic reviews in HPSR do not include a COI disclosure statement, highlighting the need for journals to strengthen and/or better implement their COI disclosure policies. While only 15% of identified disclosure statements report any COI, it is not clear whether this indicates a low frequency of COI versus an underreporting of COI, or both.

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:ImportanceConflicts of interest (COI) disclosure policies are critical to enhancing the integrity of research. However, it is unclear how Chinese medical journals interpret and enforce such policies.ObjectivesThe goal of this investigation is to determine the current status of COI disclosure policy enforcement in Chinese medical journals and to promote comprehensive COI policies.MethodsIn this cross-sectional study conducted from September 1st to October 29th 2017, journal instructions, websites and print issues of journals indexed by the Core Journals of China (version 2014), in the medical and health sector, were reviewed to identify whether COI disclosure policies existed and how complete these policies were.ResultsOf 248 eligible journals, 78 (31%) mentioned COI policies; 9 (4%) applied standardized disclosure forms; 18 (7%) required disclosure statements in articles; 4 (2%) mentioned policy bases; none validated disclosed COIs; 2 (1%) mentioned how they dealt with breaches; 18 (7%) involved the management of disclosed COIs; and 62 (25%) and 55 (22%) noted financial and nonfinancial COIs, respectively. Seventy-eight journals (31%) mentioned COIs in research and authors' obligation towards disclosure; 2 (1%) and 6 (2%) mentioned family members' and institutional COIs, respectively. Twenty-two and 11 journals mentioned at least one form of financial and nonfinancial COI type in research, respectively. Seven journals (3%) required disclosure of the source of financial support in research, but no journals mentioned the amount of support. Seven (3%) and 12 (5%) journals mentioned COIs in the editorial process and peer-review, respectively. Clinical journals (45%) paid more attention to COI policies than non-clinical journals.ConclusionsApproximately one-third of Chinese medical journals had COI policies, and of the journals that mentioned financial COIs most required nonfinancial COIs. However, the extent to which journals implemented COI policies was insufficient. There is a generic lack of standardized disclosure forms and management of COIs in most journals. The subject and details of COIs involved in the editorial and peer-review process received less attention than those in research.

Dataset Information

Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

Background

Objective

Design and participants

Approach

Results

Conclusions

Publications

Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

Similar Datasets

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