Public involvement at the design stage of primary health research: A narrative review of case examples

Boote, Jonathan; Baird, Wendy; Beecroft, Claire

doi:10.1016/j.healthpol.2009.11.007

Cited by 199 publications

(245 citation statements)

References 24 publications

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“…145 l Recent literature reviews on the impact of user involvement in health research, 148,149 which proposed multidimensional frameworks for describing the impact of users on research. l Recent reviews of user involvement in the design of health research 153 and the involvement of users in the design and conduct of clinical trials. 154 Both of these studies highlighted the specific contributions that users can make to the design and conduct of research, and the tensions and facilitating strategies that have been identified in the literature.…”

Section: Methodology For the Evaluationmentioning

confidence: 99%

Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes

Heller

Lawton

Amiel

et al. 2014

Programme Grants for Applied Research

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Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes

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Section: Methodology For the Evaluationmentioning

confidence: 99%

Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes

Heller

Lawton

Amiel

et al. 2014

Programme Grants for Applied Research

Self Cite

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“…This knowledge is essential to guide the organisers of the participatory exercise with regard to the identification of the appropriate type and extent of public involvement. Knowledge about the contexts where participatory practices are implemented is another important element of this mechanism (Abelson et al 2007;Sneddon and Fox 2007;Boote et al 2010;McCoy et al 2012). The analysis of the political, social and cultural conditions, including the role of power, enables public participation practitioners to situate efforts in making public participation contribute to the social development process.…”

Section: Concept Of the Possible Mechanism Of 'Political Commitment'mentioning

confidence: 99%

Understanding the factors that make public participation effective in health policy and planning: a realist synthesis

Pagatpatan

Ward

2017

Aust. J. Prim. Health

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Abstract. Although researchers argue for the importance of involving the public in developing health policy, there has been little focus on central research questions -such as what techniques of public participation work, in what circumstances, and why. This paper presents a realist synthesis which identifies and explains the underlying mechanisms and specific contextual factors that lead to effective public participation in health policy and planning. Peer-reviewed, English language literature was searched, which resulted in 77 articles for review and synthesis. This synthesis uncovered the underlying mechanism of 'political commitment' that generates public participation effectiveness. The other three possible underlying mechanisms, namely: 'partnership synergy', 'inclusiveness' and 'deliberativeness', were found to potentially provide further explanation on public participation effectiveness for health policy and planning. The findings of this review provide evidence that can be useful to health practitioners and decision-makers to actively involve the public when drafting public health policies and programs and, more importantly, guide them in deciding which strategies to best employ for which contexts.

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“…172 Service users in England contribute financially to publicly funded research, so, arguably, have a right to be involved 186,187 and can personally benefit from their involvement. 183,185,188 However, challenges to the successful involvement of service users in research include contrasting priorities, 183,189,190 understanding of research methods, 189 use of language and jargon, 189 and lack of time and resources. 183,189 The involvement of people with ID in research can pose additional challenges to those outlined above and include the need to plan ahead, allow time for effective communication and regular breaks, and ensure that meeting locations are accessible to all.…”

Section: Introductionmentioning

confidence: 99%

“…183,185,188 However, challenges to the successful involvement of service users in research include contrasting priorities, 183,189,190 understanding of research methods, 189 use of language and jargon, 189 and lack of time and resources. 183,189 The involvement of people with ID in research can pose additional challenges to those outlined above and include the need to plan ahead, allow time for effective communication and regular breaks, and ensure that meeting locations are accessible to all. [191][192][193][194] Such challenges can be at odds with researchers' own demands and priorities, 195 and they often resort to seeking the proxy views of 'sympathetic others', such as parents or carers, 196 which is disappointing given that people with ID have a lot to say and can improve the quality and relevance of research.…”

Section: Introductionmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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Public involvement at the design stage of primary health research: A narrative review of case examples

Cited by 199 publications

References 24 publications

Understanding the factors that make public participation effective in health policy and planning: a realist synthesis

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

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