scholarly journals Co-production and Managing Uncertainty in Health Research Regulation: A Delphi Study

2019 ◽  
Vol 28 (2) ◽  
pp. 99-120 ◽  
Author(s):  
Isabel Fletcher ◽  
Stanislav Birko ◽  
Edward S. Dove ◽  
Graeme T. Laurie ◽  
Catriona McMillan ◽  
...  
Author(s):  
Catriona McMillan ◽  
Edward Dove ◽  
Graeme Laurie ◽  
Emily Postan ◽  
Nayha Sethi ◽  
...  

Author(s):  
Elisabeta Hiriscau ◽  
Nicola Stingelin-Giles ◽  
Danuta Wasserman ◽  
Stella Reiter-Theil

2021 ◽  
Vol 9 (9) ◽  
pp. 1-116
Author(s):  
Esther MF van Sluijs ◽  
Helen E Brown ◽  
Emma Coombes ◽  
Claire Hughes ◽  
Andrew P Jones ◽  
...  

Background Family-based physical activity promotion presents a promising avenue for promoting whole-family physical activity, but high-quality research is lacking. Objectives To assess the feasibility, acceptability and preliminary effectiveness of FRESH (Families Reporting Every Step to Health), a child-led online family-based physical activity intervention; and to identify effective and resource-efficient family recruitment strategies. Design The project consisted of (1) a randomised feasibility trial, (2) a randomised controlled pilot trial and (3) a systematic review and Delphi study. Setting Norfolk/Suffolk counties, UK. Participants Families, recruited from schools, workplaces and community settings, were eligible to participate if one child aged 7–11 years and one adult responsible for their care provided written consent; all family members could participate. Interventions The FRESH intervention, guided by self-determination theory, targeted whole families and was delivered via an online platform. All family members received pedometers and were given website access to select family step challenges to ‘travel’ to target cities around the world, log steps, and track progress as they virtually globetrotted. Families were randomised to FRESH intervention, pedometer-only or control arm. Main outcome measures Physical (e.g. blood pressure), psychosocial (e.g. family functioning) and behavioural (e.g. device-measured family physical activity) measures were collected at baseline and at 8- and 52-week follow-up. A mixed-methods process evaluation assessed the acceptability of the intervention and evaluation. Data sources review Systematic search of four databases (Cochrane Library, PubMed, PsycINFO and SCOPUS). Review methods Articles were screened in duplicate, and data extraction was fully checked. Academic experts participated in the three-round Delphi study. Data were combined to identify effective and resource-efficient family recruitment strategies. Inclusion criteria Included generally healthy school-aged children and at least one adult; intervention attempted to change physical activity, sedentary behaviour, screen use, diet, or prevent overweight/obesity in multiple family members; presented relevant measure of effect in children and adults. Results The feasibility study (12 families, 32 participants; 100% retention at 8 weeks) demonstrated the feasibility and acceptability of FRESH, but highlighted that adaptations were required. Of 41 families recruited in the pilot study (149 participants), 98% and 88% were retained at the 8-week and 52-week follow-up, respectively. More children in the FRESH arm self-reported doing more family physical activity, and they thought that FRESH was fun. There were no notable between-group differences in children’s outcomes. Change in moderate to vigorous physical activity at 8 weeks favoured FRESH intervention adults [vs. control: 9.4 minutes/week (95% confidence interval 0.4 to 18.4) vs. pedometer only: 15.3 (95% confidence interval 6.0 to 24.5)], and was stronger in fathers, but this was not maintained. In 49 included studies, apart from recruitment settings and strategies used (reported in 84% and 73% of the studies, respectively), recruitment details were scarce. School-based recruitment was predominant. The Delphi study identified a wide range of recruitment settings and strategies. Limitations Recruitment was the main limitation of the FRESH studies; generalisability of the proposed recruitment strategies may be limited. Conclusions This study has demonstrated the feasibility and acceptability of the FRESH intervention. However, we failed to recruit the target sample size and were unable to demonstrate a signal of effectiveness. Future research should employ a multifaceted recruitment approach. Future work Further refinements to intervention delivery and recruitment methods should be investigated. Study registration Current Controlled Trials ISRCTN12789422 and PROSPERO CRD42019140042. Funding This project was funded by the National Institute for Health Research (NIHR) Public Health Research programme and will be published in full in Public Health Research; Vol. 9, No. 9. See the NIHR Journals Library website for further project information.


2019 ◽  
Vol 10 (4) ◽  
pp. 693-721
Author(s):  
Mark L FLEAR

I use the examples of medical devices, clinical trials and health data, to look at the framing of harm through the language of technological risk and failure. Across the examples, there is little or no suggestion of failure by those formally responsible. Failure is seen as arising when harm becomes refracted through calculative techniques and judgments, and reaches a point where the expectations of safety built into technological framings of regulation are thwarted. Technological framings may marginalise the contribution patients, research participants and others can make to regulation, which may in turn underlie harm and lead to the construction of failure. This marginalisation may amount to epistemic injustice. Epistemic injustice and its link to failure, which has normative weight over and above harm, can present a risk to organisational standing and reputation. This risk can be used to improve the knowledge base to include stakeholder knowledges of harm, and to widen responsibilities and accountabilities. This promises to allow regulation to better anticipate and prevent harm and failure, and improve the efficacy and legitimacy of the health research enterprise.


2020 ◽  
Author(s):  
Carpio-Arias Tannia Valeria ◽  
Álvarez-Dardet Carlos ◽  
Ruiz-Cantero María Teresa ◽  
Ortíz Rocío

Las políticas públicas son los proyectos que gestiona el gobierno con el fin de satisfacer una necesidad en la sociedad. Objetivo: Analizar la situación de las políticas públicas de investigación en salud en Ecuador. Métodos: Se realizó un estudio FODA (fortalezas, oportunidades, debilidades y amenazas) más un estudio Delphi a 20 informantes clave (sector público y privado) sobre su percepción de los aspectos positivos y negativos de las políticas públicas de investigación en salud del Ecuador en los últimos 8 años (2007-2014). Realización del estudio: Marzo, 2014 a febrero, 2015. Fuente de información: encuesta online. Posteriormente, los participantes ordenaron las tres estrategias más nombradas en cada componente del FODA según su importancia. Tras calcular la mediana, rangos inter cuartil y valores mínimo y máximo, los expertos llegaron al consenso final. Resultados: Los 4 componentes FODA más frecuentes fueron: Fortaleza: Apoyo gubernamental mediante Becas del Gobierno; Oportunidades: Coordinación Interinstitucional y redes de investigación. Debilidades: Trámites burocráticos, especialmente para obtención de fondos económicos para investigación, y evaluaciones de proyectos por profesionales con poca experiencia. Amenazas: Cambios de políticas inesperados, legislación confusa, disminución en los presupuestos. Conclusiones: La investigación y producción científica en el Ecuador presenta cambios importantes, se recomienda aprovechar el apoyo gubernamental, la coordinación y financiamiento institucional, fortaleciendo los recursos destinados para la investigación y evitando los trámites burocráticos y reglamentos confusos. Public policies are the projects that the government manages in order to satisfy a need in society. Objective: To analyze the situation of public health research policies in Ecuador. Methods: A SWOT study (strengths, opportunities, weaknesses and threats) plus a Delphi study was conducted on 20 key informants (public and private sector) on their perception of the positive and negative aspects of Ecuador’s public health research policies in the last 8 years (2007-2014). Conduct of the study: March 2014 to February 2015. Source of information: online survey. Subsequently, the participants ordered the three most-named strategies in each SWOT component according to their importance. After calculating the mean, median and minimum and maximum values, the experts reached the final consensus. Results: The 4 most frequent SWOT components were: Strength: Government support through Government Scholarships; Opportunities: Inter-institutional coordination and research networks. Weaknesses: Bureaucratic procedures, especially to obtain economic funds for research, and project evaluations by professionals with little experience. Threats: Unexpected policy changes, confusing legislation, decrease in budgets. Conclusions: Research and scientific production in Ecuador presents important changes, it is recommended to take advantage of government support, institutional coordination and financing, strengthening the resources allocated for research and avoiding bureaucratic procedures and confusing regulations. Palabras claves: Políticas públicas, Investigación en salud, Ecuador, Delfos. Key words: Public policies, Health research, Ecuador, Delphi.


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