The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK

Baggott, Rob; Jones, Kathryn L.

doi:10.1016/j.socscimed.2014.07.016

Cited by 32 publications

(45 citation statements)

References 35 publications

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“…National health policymaking has also been influenced by the World Health Organization policies and recommendations (El‐Jardali, Bou‐Karroum, et al, ; Odoch, Kabali, Ankunda, Zulu, & Tetui, ; Onwujekwe et al, ). European Union reports, standards, policies and regulations have provided an impetus for, or guidance on, policy reform (Ádám et al, ; Baggott & Jones, ; Mc Hugh et al, ).…”

Section: Resultsmentioning

confidence: 99%

“…Evaluation should be participatory, cooperative and informed by key actors. In health, this includes health consumer and patient organizations (Baggott & Jones, 2014). The need to identify clear outcomes for measurement at the outset was identified with challenges noted in relation to anticipating and predicting health impacts/outcomes (Ádám et al, 2012;Anderson et al, 2013;Archer et al, 2015;Baum et al, 2014).…”

Section: Discussionmentioning

confidence: 99%

“…Eighteen papers dealt with this domain. Two studies undertook an analysis of national data sets containing quantitative data (Ádám, Molnár, Gulis, & Ádány, 2012;Crettenden et al, 2014), one study used quantitative data gathered employing a survey (Baggott & Jones, 2014) and the remainder were qualitative studies, often using a case study approach.…”

Section: Contextmentioning

confidence: 99%

“…Stakeholders can be a diverse group with different backgrounds and frames of reference (Baum et al, 2014). The time and resource requirement and financial cost of participating in policymaking can also create difficulties for stakeholders as it can mean redirecting resources away from other activities (Baggott & Jones, 2014;Cleemput et al, 2015;Mulvale et al, 2014). Managing stakeholders is a key factor in achieving policy change and low stakeholder involvement can impede the process and the sustainability of change (Ade et al, 2016;Basaza et al, 2013;Mc Hugh et al, 2014).…”

Section: Stakeholder Consultationmentioning

confidence: 99%

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Integrative review; identifying the evidence base for policymaking and analysis in health care

Kennedy

O’Reilly

O’Connell

et al. 2019

Journal of Advanced Nursing

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Aim The aim of this was to identify and synthesize the evidence underpinning the health policymaking process to inform the development of a health‐related policy analysis framework. Design A mixed methods review using “Best Fit” Framework synthesis. Data Sources PUBMED and CINAHL+ databases for English language papers published between March 2013 – March 2017. Review Methods Titles were screened, data abstracted and analysed by two authors at each stage. Findings from included studies were coded against six a priori categories which had been constructed through a preliminary literature review, consultation and consensus. Results Sixty‐eight papers were included. There exists empirical support for six key domains which require to be addressed in the policymaking and analysis process: (1) Context; (2) Process; (3) Content; (4) Stakeholder Consultation; (5) Implementation; and (6) Evaluation. Failure to contextualize and integrate these six domains in problem identification, policy analysis, strategy and policy development, policy enactment and policy implementation is problematic. Conclusion There is a need to test and refine the constructs linked to the policymaking cycle taking cognizance of the context where these are developed, implemented and evaluated. Impact This review makes a novel contribution to the synthesis of evidence to inform the policymaking and analysis process. Findings illuminate the complexity of policymaking, the competing pressures involved and the importance of the local, national and international context. These findings have international relevance and provide empirical support for key criteria to guide those involved in context specific policymaking and/or the analysis of existing policy.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Contextmentioning

confidence: 99%

Section: Stakeholder Consultationmentioning

confidence: 99%

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Integrative review; identifying the evidence base for policymaking and analysis in health care

Kennedy

O’Reilly

O’Connell

et al. 2019

Journal of Advanced Nursing

View full text Add to dashboard Cite

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“…Van de Bovenkamp and Trappenburg also identify that patients have difficulty in influencing policy processes, noting that patient participation is sometimes tokenism (the ‘tick box’ approach that patients and patient organisations decry) (Van de Bovenkamp and Trappenburg, ). Baggott and Jones (), in a survey of UK health consumer and patient organisations, found rather disappointingly that ‘although health consumer and patient organisations have pursued and responded to agendas relating to health policy and reform, we know little about their actual influence’ (Baggott and Jones, , p. 207).…”

Section: Patient Participation In Decision Makingmentioning

confidence: 99%

Patient Power as a Driver for Change: Reality or Rhetoric?

Mossman¹,

Baker²,

Kossler³

2017

Global Policy

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Abstract'Patient-centred care' is a term often used in relation to health care policy and delivery, and it might be assumed that the patient perspective is an integral part of the decisions made by policy makers and health care providers. It might also be assumed that processes such as health technology assessments have mechanisms embedded in their methodology to faithfully capture what it means to live with an illness and the potential benefits (and risks) a new technology will bring to the people likely to use it. Although there are many good reasons to involve patients in decisions -from the personal to the policy level -many issues must be resolved before health care truly delivers 'nothing about me without me' to patients.

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Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest

et al. 2017

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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. Many PAOs report having financial relationships with for-profit industry, yet little is known about the nature of these relationships.OBJECTIVE To describe the nature of industry funding and partnerships between PAOs and for-profit companies in the United States. DESIGN, SETTING, AND PARTICIPANTSA 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. 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. RESULTSOf the 439 surveys mailed to PAO leaders, 289 (65.8%) were returned with at least 80% of the questions answered. The PAOs varied widely in terms of size, funding, activities, and disease focus. The median total revenue among responding organizations was $299 140 (interquartile range, $70 000-$1 200 000). 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. 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%). 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. A total of 22 of 285 PAO leaders (7.7%) perceived pressure to conform their positions to the interests of corporate donors. CONCLUSIONS AND RELEVANCEPatient advocacy organizations engage in wide-ranging health activities. Although most PAOs receive modest funding from industry, a minority receive substantial industry support, raising added concerns about independence. Many respondents report a need to improve their conflict of interest policies to help maintain public trust.

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The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK

Cited by 32 publications

References 35 publications

Integrative review; identifying the evidence base for policymaking and analysis in health care

Integrative review; identifying the evidence base for policymaking and analysis in health care

Patient Power as a Driver for Change: Reality or Rhetoric?

Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest

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