Going the extra mile – creating a co-operative model for supporting patient and public involvement in research

Horobin, Adele

doi:10.1186/s40900-016-0025-z

Cited by 12 publications

(11 citation statements)

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“…10,12 The third argument is political and practical: that forming alliances with patients and the public is a defining feature of contemporary Mode 2 science (in which knowledge is co-constructed by scientists and citizens, often beyond the walls of the university 13 ); it increases the accountability and transparency of research and may be an effective way of attracting resources. 5,10 Notwithstanding the different (and to some extent incommensurable) perspectives represented by the above literature, it is clear that improving patient and public involvement in research is a high priority for research policymakers, [14][15][16] research funders, [17][18][19][20] researchers, [21][22][23] some academic journals 1 and patient and lay organizations. [24][25][26] Many of these groups have developed, or are in the process of developing, structured frameworks, tools, guidelines and checklists in an attempt to improve their own performance and (in some cases) critique or assess the performance of others.…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…Notwithstanding the different (and to some extent incommensurable) perspectives represented by the above literature, it is clear that improving patient and public involvement in research is a high priority for research policymakers, research funders, researchers, some academic journals and patient and lay organizations . Many of these groups have developed or are in the process of developing, structured frameworks, tools, guidelines and checklists in an attempt to improve their own performance and (in some cases) critique or assess the performance of others.…”

Section: Introductionmentioning

confidence: 99%

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Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Greenhalgh

Hinton

Finlay

et al. 2019

Health Expectations

541

650

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Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.

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Section: Backg Rou N Dmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Greenhalgh

Hinton

Finlay

et al. 2019

Health Expectations

541

650

View full text Add to dashboard Cite

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“…There are many areas of the UK which are now benefiting from regional working in terms of Patient and Public Involvement. Sharing examples of regional working is useful for learning what works well, such as in the West of England [20] and 'share-bank' in the Midlands [21]. Our reflections demonstrate many advantages of regional working; firstly being able to access existing PPI groups and individuals to discuss early research ideas; secondly, the PPI leads can help identify potential PPI contributors, distribute research tools (such as surveys), support the dissemination of findings and linking in with local organisations and services; and thirdly, provide peer support and information sharing for PPI contributors, PPI leads and researchers.…”

Section: Discussionmentioning

confidence: 99%

Regional working in the East of England: using the UK National Standards for Public Involvement

et al. 2018

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Plain English summaryInvolving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors.The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study.Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes.The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research.Abstract Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors’ final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vi...

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“…As a result of this project, establishing coordination across organisations and co-production of public involvement training has created a solid foundation for further collaborative activities. Indeed, this has spawned the establishment of the public involvement training ‘Sharebank’ to deliver training and support for public involvement [ 19 ]. Based on organisations sharing resources on a reciprocal basis, without the need to pay for training, this initiative will help public involvement training and support gain a more sustainable footing.…”

Section: Discussionmentioning

confidence: 99%

Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme

Horobin

Brown²,

Higton³

et al. 2017

Res Involv Engagem

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Plain english summary Members of the public share their views with researchers to improve health and social care research. Lay assessing is one way of doing this. This is where people, drawing upon personal and general life experience, comment on material, such as grant applications and patient information, to highlight strengths and weaknesses and to suggest improvements. This paper reports on setting up a training programme for lay assessors. Meetings were held between interested public and staff from research organisations. People discussed what lay assessing is, why they want to do it, skills and support needed and if training was wanted. They were invited to form a group to develop the training together. Training was delivered in the East Midlands. People who attended gave their thoughts about it by completing questionnaires and joining a feedback event. The group developed the structure of the training programme together and it oversaw the development of the training content by individual members. People who attended training reported feeling more confident about lay assessing. This was particularly so for those who had not done lay assessing before. They indicated how valuable it was to talk with others at the training. Our findings support the National Institute for Health Research recommendations for improving learning and development for public involvement in research. This project has created a solid base for local research organisations to work together in public involvement training. Lay assessor training is now part of a wider programme of shared resources called the Sharebank. Abstract Background Involving members of the public in research can improve its quality and incorporate the needs and views of patients. One method for doing this is lay assessing, where members of the public are consulted to improve research materials. This paper documents the establishment of a pilot training programme for lay assessors. It describes a way of working that embodies a regional, cross-organisational approach to co-producing training with members of the public. Methods Open meetings, led by AH, were held for existing and aspiring lay assessors to define lay assessing, motivations for doing it, skills required, associated learning and development needs, and to gauge interest for training. Those who attended meetings, including members of the public and staff, were invited to form a working group to co-produce the training programme. Training was delivered in modules at two centres in the East Midlands and evaluated through participant feedback at the end of each module and at an evaluation event. Feedback was through a mix of Likert scale scoring, open text and verbal responses. Results Discussions from the open meetings informed the development of the training by the working group. Led by AH, the working group, as a whole, co-produced the structure ...

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Going the extra mile – creating a co-operative model for supporting patient and public involvement in research

Cited by 12 publications

References 0 publications

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Regional working in the East of England: using the UK National Standards for Public Involvement

Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme

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