Industry funding of patient and health consumer organisations: systematic review with meta-analysis.

OBJECTIVE: To investigate pharmaceutical or medical device industry funding of patient groups. DESIGN: Systematic review with meta-analysis. DATA SOURCES: Ovid Medline, Embase, Web of Science, Scopus, and Google Scholar from inception to January 2018; reference lists of eligible studies and experts in the field. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Observational studies including cross sectional, cohort, case-control, interrupted time series, and before-after studies of patient groups reporting at least one of the following outcomes: prevalence of industry funding; proportion of industry funded patient groups that disclosed information about this funding; and association between industry funding and organisational positions on health and policy issues. Studies were included irrespective of language or publication type. REVIEW METHODS: Reviewers carried out duplicate independent data extraction and assessment of study quality. An amended version of the checklist for prevalence studies developed by the Joanna Briggs Institute was used to assess study quality. A DerSimonian-Laird estimate of single proportions with Freeman-Tukey arcsine transformation was used for meta-analyses of prevalence. GRADE (Grading of Recommendations Assessment, Development, and Evaluation) was used to assess the quality of the evidence for each outcome. RESULTS: 26 cross sectional studies met the inclusion criteria. Of these, 15 studies estimated the prevalence of industry funding, which ranged from 20% (12/61) to 83% (86/104). Among patient organisations that received industry funding, 27% (175/642; 95% confidence interval 24% to 31%) disclosed this information on their websites. In submissions to consultations, two studies showed very different disclosure rates (0% and 91%), which appeared to reflect differences in the relevant government agency's disclosure requirements. Prevalence estimates of organisational policies that govern corporate sponsorship ranged from 2% (2/125) to 64% (175/274). Four studies analysed the relationship between industry funding and organisational positions on a range of highly controversial issues. Industry funded groups generally supported sponsors' interests. CONCLUSION: In general, industry funding of patient groups seems to be common, with prevalence estimates ranging from 20% to 83%. Few patient groups have policies that govern corporate sponsorship. Transparency about corporate funding is also inadequate. Among the few studies that examined associations between industry funding and organisational positions, industry funded groups tended to have positions favourable to the sponsor. Patient groups have an important role in advocacy, education, and research, therefore strategies are needed to prevent biases that could favour the interests of sponsors above those of the public. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42017079265.

How do health consumer organisations in Australia manage pharmaceutical industry sponsorship? A cross-sectional study.

Objective The aim of this study was to investigate how health consumer organisations manage their relationships with the pharmaceutical industry in Australia. Methods We identified 230 health consumer organisations that received pharmaceutical industry support from 2013 to 2016 according to reports published by Medicines Australia, the industry trade association. A random sample of 133 organisations was selected and their websites assessed for financial transparency, policies governing corporate sponsorship and evidence of potential industry influence. Results In all, 130 of the 133 organisations evaluated received industry funding. Of these 130, 68 (52.3%; 95% confidence interval (CI) 43.4-61.1%) disclosed this funding. Nearly all (67; 98.5%) reported the identity of their industry donors, followed by uses (52.9%), amount (13.2%) and proportion of income from industry (4.4%). Less than one-fifth (24/133; 18.0%; 95% CI 11.9-25.6%) had publicly available policies on corporate sponsorship. Six organisations (7.2%; 95% CI 2.7-15.1%) had board members that were currently or previously employed by pharmaceutical companies, and 49 (36.8%; 95% CI 28.6-45.6%) had company logos, web links or advertisements on their websites. Conclusion Industry-funded health consumer organisations in Australia have low transparency when reporting industry funding and few have policies governing corporate sponsorship. Relationships between health consumer organisations and the industry require effective actions to minimise the risks of undue influence. What is known about this topic? Pharmaceutical industry funding of health consumer organisations is common in the US and Europe, yet only a minority of such organisations publicly disclose this funding and have policies regulating their relationships with industry. What does this paper add? Industry-funded health consumer organisations in Australia have inadequate financial transparency and rarely have policies addressing corporate funding. Organisations that have received more industry funding are more likely to report it publicly. What are the implications for practitioners? Robust policies addressing corporate sponsorship and increased transparency are needed to maintain the independence of health consumer organisations. Governments may also consider regulating non-profit organisations to ensure public reporting of funding sources.

A buyers' club to improve access to hepatitis C treatment for vulnerable populations.

Hepatitis C is a potentially fatal viral infection that mainly affects vulnerable patient groups. Given the high efficacy of the new direct-acting antivirals (DAAs), the World Health Organization (WHO) aims to eliminate viral hepatitis as a global health threat by 2030. However, due to the high cost of DAAs, this recommendation has put significant pressure on the budgets of countries with mandatory health insurance, such as Switzerland. There are particular challenges related to populations with low socioeconomic status or without residence permits who might not be covered by health insurance, or who forgo health care for economic reasons. This article discusses some of the key issues on this topic, such as reaching the populations most at risk from the hepatitis C virus (HCV) infection, and improving access to care and treatment for underserved, uninsured populations. We suggest a personal importation scheme for unapproved generics of DAA medications, and the use of a buyers' club as a strategy for improving universal access to hepatitis C medicines among vulnerable populations such as uninsured patients, in order to achieve the WHO goals with minimal disruption of the conventional, patent-based business model.

The financing of clinical genetics research by disease advocacy organizations: A review of funding disclosures in biomedical journals.

Anecdotal reports suggest that disease-advocacy groups (DAOs) participate in multiple aspects of clinical research. No systemic analysis of the extent of DAO involvement in clinical genetics research has been conducted to date. We conducted a systematic review of journal articles published in 2004 and 2005 reporting clinical research on 50 genetic diseases to assess the extent to which DAOs financed the studies reported, assisted in subject recruitment, or participated in other aspects of research. Of 513 articles, 350 (68%) included a statement regarding research support. Of these articles, 114 (33%) acknowledged DAO funding. The proportion of articles reporting financial support from a DAO varied greatly by disease. Articles reporting financial support from a DAO often identified at least one additional source of support (73%). Of the articles examined, 19 (4%) acknowledged DAO assistance with subject recruitment and 11 (2%) included an author affiliated with a DAO. DAOs provide financial support for numerous clinical research studies in genetics, often in partnership with government agencies and for-profit corporations. DAOs also participate in other aspects of clinical research, including subject recruitment. Future studies should seek to characterize these research partnerships more fully.

How people can benefit from mental health consumer-run organizations.

The goal of this study is to develop a more comprehensive theoretical understanding of the processes by which people can benefit from mental health consumer-run organizations (CROs). To accomplish this goal, the concept of roles is used to create a preliminary framework that draws connections between several established theoretical explanations. To ground theory development in empirical data, 194 CRO members from 20 CROs answered open-ended questions about what personal changes occurred as a result of their CRO involvement and what CRO participation experiences enabled personal change. Data analysis led to the identification of 18 personal change categories and 7 experiences that led to change. These categories were integrated into the preliminary theoretical framework, which needed to be extended to accommodate all categories. While inevitably tentative, the final conceptualization provides a more comprehensive understanding of the processes by which people can benefit from CRO participation.

A randomized trial of a mental health consumer-managed alternative to civil commitment for acute psychiatric crisis.

This experiment compared the effectiveness of an unlocked, mental health consumer-managed, crisis residential program (CRP) to a locked, inpatient psychiatric facility (LIPF) for adults civilly committed for severe psychiatric problems. Following screening and informed consent, participants (n = 393) were randomized to the CRP or the LIPF and interviewed at baseline and at 30-day, 6-month, and 1-year post admission. Outcomes were costs, level of functioning, psychiatric symptoms, self-esteem, enrichment, and service satisfaction. Treatment outcomes were compared using hierarchical linear models. Participants in the CRP experienced significantly greater improvement on interviewer-rated and self-reported psychopathology than did participants in the LIPF condition; service satisfaction was dramatically higher in the CRP condition. CRP-style facilities are a viable alternative to psychiatric hospitalization for many individuals facing civil commitment.

"Be receptive to the good earth": health, nature, and labor in countercultural back-to-the-land settlements.

Modern environmental activists unified behind calls for a change in how humans understood their relationships with nature. Yet they approached their concerns through a variety of historical lenses. Countering arguments that suggest environmentalism had its deepest roots in outdoor leisure, the countercultural back-to-the-land movement turned to a markedly American practice of pastoral mythmaking that held rural life and labor as counter to the urban-industrial condition. Counterculturalists relied specifically on notions of simple work in rural collective endeavors as the means to producing a healthy body and environment. Yet the individuals who went back-to-the-land often failed to remedy conflicts that arose as they attempted to abandon American consumer practices and take up a "primitive" and down-to-early pastoral existence. Contact with rural nature time and again translated to physical maladies, impoverishment, and community clashes in many rural countercultural communes. As the back-to-the-land encounter faded, the greater movement's ethos did not disappear. Counterculturalists used the consumption of nature through rural labor as a fundamental idea in a growing cooperative food movement. The back-to-the-land belief in the connection between healthy bodies, environments, and a collective identity helped to expand a new form of consumer environmentalism.

Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families.

Longitudinal impacts of a consumer-directed support program that provides families with an individualized budget were studied at three points in time over a 9-year period: Time 1 (1991), Time 2 (1995), and Time 3 (2000). At Time 3, families in the program were also compared with families on the waiting list. Over time, families in the program experienced decreased unmet service needs, higher service satisfaction, increased community participation of individuals with disabilities, and decreased caregiver burden. At Time 3 families in the program had fewer unmet needs and higher service satisfaction than did families on the waiting list; there were no differences in community participation and caregiver burden.

The creation of industry front groups: the tobacco industry and "get government off our back".

We investigated how industries use front groups to combat public health measures by analyzing tobacco industry documents, contemporaneous media reports, journal articles, and press releases regarding "Get Government Off Our Back," a coalition created by the tobacco industry. RJ Reynolds created Get Government Off Our Back in 1994 to fight federal regulation of tobacco. By keeping its involvement secret, RJ Reynolds was able to draw public and legislative support and to avoid the tobacco industry reputation for misrepresenting evidence. The tobacco industry is not unique in its creation of such groups. Research on organizational background and funding could identify other industry front groups. Those who seek to establish measures to protect public health should be prepared to counter the argument that government should not regulate private behavior.

A range of results. Healthcare groups had mixed financial picture in 1998.

When it comes to financial performance, some not-for-profit healthcare organizations certainly can say that they're not in the profit business. Their margins are well into negative numbers. But others, including some hospital groups, post margins that would make investor-owned companies jealous. Modern Healthcare takes a look at the financial data contained in not-for-profits' latest filings with the Internal Revenue Service.