scholarly journals The value of involving patients and public in health services research and evaluation: a qualitative study

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Pooja Saini ◽  
Shaima M. Hassan ◽  
Esmaeil Khedmati Morasae ◽  
Mark Goodall ◽  
Clarissa Giebel ◽  
...  
Keyword(s):  
Health Services Research ◽  
Health Service ◽  
Health Services ◽  
Health Research ◽  
Patient Involvement ◽  
Services Research ◽  
The Public ◽  
Applied Health Research ◽  
The Impact ◽  
Public And Patient Involvement

Abstract Background Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, caregivers and communities (who use services or care for patients). The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care [NIHR CLAHRC] NWC to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people’s health and wellbeing and reduce emergency hospital admissions. This paper seeks to explore an approach developed for involving the public as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and how change occurred within the organisations following their involvement. Methods A qualitative approach using focus group discussions was adopted to explore the experiences of two cohorts of participants involved in PPP project teams. Focus groups were held with public advisors (n = 9), interns (n = 9; staff or public who received a funded internship for a PPP project), NHS and Local Authority initiative leads (n = 10), and academic facilitators (n = 14). These were transcribed verbatim and analysed using a thematic approach. Results Thirty-two public advisors were recruited to support 25 PPP projects across the Collaboration for Leadership in Applied Health Research and CLAHRC North West Coast [NWC] partner organisations. Three inter-related themes were conceptualised: 1)“Where it all started - involving public advisors” identified the varying journeys to recruitment and experiences of becoming a public advisor; 2)“Steps toward active involvement and engagement” related to public advisors becoming core team members; and 3) “Collaborative working to enhance public and patient involvement” relayed how projects identified the benefits of working jointly with the public advisors, particularly for those who had not experienced this style of working before. Conclusions The findings indicate that the PPP model is effective for embedding Public and Patient Involvement [PPI] within health services research, and recommends that PPI is integrated at the earliest opportunity within research projects and service evaluations through the use of support-led and facilitative programmes.

scholarly journals Interaction and innovation: practical strategies for inclusive consumer-driven research in health services

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e031555 ◽  
Author(s):  
Maria R Dahm ◽  
Anthony Brown ◽  
Dean Martin ◽  
Maureen Williams ◽  
Brian Osborne ◽  
...  
Keyword(s):  
Data Analysis ◽  
Health Services Research ◽  
Health Services ◽  
Research Design ◽  
Research Process ◽  
Consumer Involvement ◽  
Consumer Engagement ◽  
Services Research ◽  
Active Involvement ◽  
The Impact

IntroductionDespite advances in the co-creation of clinical research involving consumers in the last few decades, consumer engagement in health services research generally remains inconsistent and is too often treated as a perfunctory exercise.ObjectiveDrawing on a health services study on diagnostic test result management, communication and follow-up, we: (1) outline practical strategies used to enhance the contribution of health consumer representatives across all stages of health services research, including active involvement in prioritising objectives for data analysis and participating in data analysis and the dissemination of findings; and (2) describe the impact of continued engagement of consumers on the programme of research, the interpretation of findings and their translational potential.Key innovationsKey enabling innovations for engagement included: (1) planned opportunities for long-term consumer involvement across all stages of the research process from conception to dissemination; (2) enhanced consumer engagement capacity; (3) purposeful recruitment of appropriately trained consumers; (4) provision of support structures for active consumer involvement in research design, analysis and write-up; and (5) financial support for consumer involvement.Impact/ConclusionEnhancing consumer contribution and establishing inclusive research design requires a negotiated, interactive, meaningful and transparent process. As a collaborative approach, consumer-driven research involvement offers opportunities for new, often unexpected or unexplored perspectives to feature across the whole research process. In a move away from tokenistic consumer involvement, consumers and researchers who participated in this novel and immersive research project identified inclusive research as a powerful tool to enhance health services research and its translation into effective policy.

scholarly journals “An Active, Productive Life”: Narratives of, and Through, Participation in Public and Patient Involvement in Health Research

2020 ◽  
Vol 30 (14) ◽  
pp. 2265-2277
Author(s):  
Joanna Reynolds ◽  
Ruth Beresford
Keyword(s):  
Health Research ◽  
Social Life ◽  
Social Practice ◽  
Patient Involvement ◽  
Research Process ◽  
Financial Status ◽  
The Public ◽  
The United Kingdom ◽  
Social Agendas ◽  
Public And Patient Involvement

Public and patient involvement (PPI)—engaging the public in designing and delivering research—is increasingly expected in health research, reflecting recognition of the value of “lay” knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors’ lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader “life-worlds.” Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research.

scholarly journals The Politics of Health Services Research: Health Professionals as Hired Hands in a Commissioned Research Project in England

2014 ◽  
Vol 19 (3) ◽  
pp. 118-128 ◽  
Author(s):  
Simon Dyson ◽  
Sue Dyson
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Social Relations ◽  
Clinical Staff ◽  
Health Staff ◽  
Validity And Reliability ◽  
Services Research ◽  
Ideal Types ◽  
Research Production ◽  
The Impact

Previous health services research has failed to account for the role played by clinical staff in the collection of data. In this paper we use the work of Roth on hired hand research to examine the politics of evidence production within health services research. Sociologies of work predict lack of engagement in the research tasks by subordinated groups of workers. We examine the role of midwives in researching ante-natal screening for sickle cell and thalassaemia in England, and construct three ideal types: repairers, refractors, and resisters to account for the variable engagement of health staff with research. We find some features of the hired hand phenomenon predicted by Roth to be in evidence, and suggest that the context of our project is similar to much health services research. We conclude that without concerted attempts (1) to change the social relations of research production; (2) to mitigate hired hand effects; (3) to assess the impact of the hired hand effect on the validity and reliability of findings, and (4) to report on these limitations, that health services research involving large teams of subordinated clinical staff as data collectors will be prone to produce evidence that is of limited trustworthiness.

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