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Article ; Online: The patient voice: More than a tick box exercise?

Jenkins, Hannah Elizabeth / Boddy, Kate / Bull, Stephanie Anne

2023 Volume 20, Issue 6, Page(s) e13595

Abstract: Background: Patient and public involvement (PPI) in healthcare professional education is important, yet publications often provide insufficient detail about the types of involvement patients undertake and the level of autonomy that they have. This study ...

Abstract	Background: Patient and public involvement (PPI) in healthcare professional education is important, yet publications often provide insufficient detail about the types of involvement patients undertake and the level of autonomy that they have. This study details the factors that promote or hinder PPI within a university healthcare professional education setting and the types of activities members conducted. Methods: PPI activities were described and mapped against a framework for PPI in healthcare professional education. Semi-structured interviews with PPI group members explored the motivators, enablers and barriers that influence involvement. Findings: The framework highlighted that the PPI group were involved in a range of activities, yet they received limited training for their role and were infrequently involved in planning the activities. When interviewed, PPI members did not consider that these factors were the important promoters or barriers to involvement, instead emphasising five themes: (1) their individual characteristics, (2) factors relating to the university organisation, (3) relationships between themselves, faculty and students, (4) time in their role and (5) evidence of their impact. Discussion and conclusion: Supporting PPI members whilst working, rather than provision of formal training was considered most empowering for group members. This was mediated through having enough time in their role to develop supportive relationships with faculty, which in turn promoted self-confidence and increased autonomy. This should be considered when making PPI appointments. Small changes in processes during education planning can make it easier for PPI members to bring their own agenda forward and promote equity during education decision making.
MeSH term(s)	Humans ; Patient Participation ; Faculty
Language	English
Publishing date	2023-07-03
Publishing country	England
Document type	Journal Article
ZDB-ID	2151518-9
ISSN	1743-498X ; 1743-4971
ISSN (online)	1743-498X
ISSN	1743-4971
DOI	10.1111/tct.13595
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Article ; Online: How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors.

Lang, Iain / King, Angela / Jenkins, Georgia / Boddy, Kate / Khan, Zohrah / Liabo, Kristin

BMJ open

2022 Volume 12, Issue 5, Page(s) e063356

Abstract: Objectives: Patient and public involvement (PPI) in health research is required by some funders and publications but we know little about how common it is. In this study we estimated the frequency of PPI inclusion in health research papers and analysed ... ...

Abstract	Objectives: Patient and public involvement (PPI) in health research is required by some funders and publications but we know little about how common it is. In this study we estimated the frequency of PPI inclusion in health research papers and analysed how it varied in relation to research topics, methods, funding sources and geographical regions. Design: Cross-sectional. Methods: Our sample consisted of 3000 research papers published in 2020 in a general health-research journal ( Results: 618 (20.6%) of the papers in our sample included PPI. The proportion of papers including PPI varied in relation to location (from 44.5% (95% CI 40.8% to 48.5%) in papers from the UK to 3.4% (95% CI 1.5% to 5.3%) in papers from China), method (from 38.6% (95% CI 27.1% to 50.1%) of mixed-methods papers to 5.3% (95% CI -1.9% to 12.5%) of simulation papers), topic (from 36.9% (95% CI 29.1% to 44.7%) of papers on mental health to 3.4% (95% CI -1.3% to 8.2%) of papers on medical education and training, and funding source (from 57.2% (95% CI 51.8% to 62.6%) in papers that received funding from the UK's National Institute for Health Research to 3.4% (95% CI 0.7% to 6.0%) in papers that received funding from a Chinese state funder). Conclusions: Most research papers in our sample did not include PPI and PPI inclusion varied widely in relation to location, methods, topic and funding source.
MeSH term(s)	China ; Cross-Sectional Studies ; Humans ; Patient Participation/methods ; Publications ; Research Design
Language	English
Publishing date	2022-05-24
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2022-063356
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Epistemic justice in public involvement and engagement: Creating conditions for impact.

Liabo, Kristin / Cockcroft, Emma J / Boddy, Kate / Farmer, Leon / Bortoli, Silvia / Britten, Nicky

Health expectations : an international journal of public participation in health care and health policy

2022 Volume 25, Issue 4, Page(s) 1967–1978

Abstract: Introduction: Patient and public involvement in research is anchored in moral and epistemological rationales. Moral rationales relate to the public having a right to influence how knowledge about them is generated. Epistemological rationales relate to ... ...

Abstract	Introduction: Patient and public involvement in research is anchored in moral and epistemological rationales. Moral rationales relate to the public having a right to influence how knowledge about them is generated. Epistemological rationales relate to how research design and implementation can improve when informed by experiential, as well as technical, knowledge. In other words, public involvement can increase the epistemological resources of researchers, and contribute to research that is fit for purpose and has high external validity. Methods: This article presents an analysis of 3 meetings and 11 interviews with public collaborators and researchers in three UK-based health research studies. Data comprised transcripts of audio-recorded research meetings and interviews with public collaborators and researchers. Data were first analysed to develop a data-informed definition of experiential knowledge, then thematically to investigate how this experiential knowledge was considered and received within the research space. Results: At meetings, public collaborators shared their experiential knowledge as stories, comments, questions, answers and when referring to their own roles. They were aware of crossing a boundary from everyday life, and some adapted their contributions to fit within the research space. Although researchers and public collaborators made efforts to create an inclusive climate, obstacles to impact were identified. Conclusions: Considering experiential knowledge as a boundary object highlights that this knowledge has a different form to other kinds of knowledge that contribute to research. To enable impact from experiential knowledge, researchers need to create a space where public collaborators experience epistemic justice. Patient and public contribution: The Peninsula Public Engagement Group (PenPEG) was involved in the planning and conceptualization of the study, including the development of the ethics application and the interview schedules. One member of this group (Richard Fitzgerald) and one from outside the group (Leon Farmer), were full members of the author team and were involved in the data analysis. Leon Farmer has since become a member of PenPEG. Richard Fitzgerald and Leon Farmer were not involved in the three research studies sampled for this study. Sadly Richard Fitzgerald died during the course of this study.
MeSH term(s)	Humans ; Knowledge ; Morals ; Research Personnel ; Social Justice
Language	English
Publishing date	2022-06-30
Publishing country	England
Document type	Journal Article
ZDB-ID	2119434-8
ISSN	1369-7625 ; 1369-6513
ISSN (online)	1369-7625
ISSN	1369-6513
DOI	10.1111/hex.13553
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Article ; Online: Clarifying the roles of patients in research.

Liabo, Kristin / Boddy, Kate / Burchmore, Helen / Cockcroft, Emma / Britten, Nicky

British journal of sports medicine

2019 Volume 53, Issue 20, Page(s) 1324

MeSH term(s)	Biomedical Research/ethics ; Biomedical Research/trends ; Humans ; Patient Participation ; Qualitative Research ; Sports Medicine/ethics ; Sports Medicine/trends
Language	English
Publishing date	2019-10-03
Publishing country	England
Document type	Editorial
ZDB-ID	600592-5
ISSN	1473-0480 ; 0306-3674
ISSN (online)	1473-0480
ISSN	0306-3674
DOI	10.1136/bjsports-2018-k1463rep
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Article ; Online: Measuring the cost-effectiveness of treatments for people with multiple sclerosis: Beyond quality-adjusted life-years.

Hawton, Annie / Goodwin, Elizabeth / Boddy, Kate / Freeman, Jennifer / Thomas, Sarah / Chataway, Jeremy / Green, Colin

Multiple sclerosis (Houndmills, Basingstoke, England)

2020 Volume 28, Issue 3, Page(s) 346–351

Abstract: Background: It is a familiar story. A promising multiple sclerosis (MS) treatment clears the three regulatory hurdles of safety, quality and efficacy, only to fall at the fourth: cost-effectiveness. This has led to concerns about the validity of the ... ...

Abstract	Background: It is a familiar story. A promising multiple sclerosis (MS) treatment clears the three regulatory hurdles of safety, quality and efficacy, only to fall at the fourth: cost-effectiveness. This has led to concerns about the validity of the measures typically used to quantify treatment effects in cost-effectiveness analyses and in 2012, in the United Kingdom, the National Institute for Health and Care Excellence called for an improvement in the cost-effectiveness framework for assessing MS treatments. Objective and methods: This review describes what is meant by cost-effectiveness in health/social care funding decision-making, and usual practice for assessing treatment benefits. Results: We detail the use of the quality-adjusted life-year (QALY) in resource allocation decisions, and set out limitations of this approach in the context of MS. Conclusion: We conclude by highlighting methodological and policy developments which should aid addressing these limitations.
MeSH term(s)	Cost-Benefit Analysis ; Humans ; Multiple Sclerosis/therapy ; Quality-Adjusted Life Years ; United Kingdom
Language	English
Publishing date	2020-09-03
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	1290669-4
ISSN	1477-0970 ; 1352-4585
ISSN (online)	1477-0970
ISSN	1352-4585
DOI	10.1177/1352458520954172
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Article ; Online: Does funded research reflect the priorities of people living with type 1 diabetes? A secondary analysis of research questions.

Boddy, Kate / Cowan, Katherine / Gibson, Andy / Britten, Nicky

BMJ open

2017 Volume 7, Issue 9, Page(s) e016540

Abstract: Objectives: This study explored the divergence and convergence between funded research about type 1 diabetes and the research agenda of people living with the condition and their carers.: Design, method, setting: A secondary analysis was undertaken ... ...

Abstract	Objectives: This study explored the divergence and convergence between funded research about type 1 diabetes and the research agenda of people living with the condition and their carers. Design, method, setting: A secondary analysis was undertaken of existing data from two UK organisations who regularly work with patients and carers to identify research priorities. The research ideas of people with diabetes were identified in two ways: in 15 research question generation workshops involving approximately 100 patients and carers, and in a James Lind Alliance Type 1 Diabetes Priority Setting Partnership with approximately 580 patients, carers and clinicians (clinician question submissions were excluded from analysis). A total of 859 individual research questions were collected from patients and carers. Diabetes research funding activity was identified through extensive online searches which provided a total of 172 relevant research projects for analysis. Results: The data were thematically analysed and areas of priority for research identified and compared between the patient and funded research agendas. The overall finding of this study is that there is substantial convergence between the two research agendas, alongside some important areas of divergence. The key areas of divergence were found in care delivery, injection issues, psychosocial impacts and women's health. We also demonstrate how an apparently convergent priority can host significant differences in emphasis between patient-generated and funded research agendas. Conclusions: We offer a comparison of a funded research agenda with one that has been derived directly from people with type 1 diabetes without initial framing by researchers. This provided a rare opportunity to explore the viewpoints of the end-users of research and compare them to realised research as determined by researchers and research organisations.
MeSH term(s)	Biomedical Research/organization & administration ; Caregivers ; Cooperative Behavior ; Diabetes Mellitus, Type 1 ; Health Priorities ; Humans ; Surveys and Questionnaires
Language	English
Publishing date	2017-09-27
Publishing country	England
Document type	Journal Article ; Multicenter Study
ZDB-ID	2747269-3
ISSN	2044-6055 ; 2044-6055 ; 2053-3624
ISSN (online)	2044-6055
ISSN	2044-6055 ; 2053-3624
DOI	10.1136/bmjopen-2017-016540
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Article ; Online: Involving Patients in Health Economics Research: "The PACTS Principles".

Hawton, Annie / Boddy, Kate / Kandiyali, Rebecca / Tatnell, Lynn / Gibson, Andy / Goodwin, Elizabeth

The patient

2020 Volume 14, Issue 4, Page(s) 429–434

Abstract: Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a ... ...

Abstract	Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement-discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing "unknown unknowns". Task-based approaches offer a more focused means of shedding light on "known unknowns". Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a "lived experience" perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these "PACTS Principles" complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.
MeSH term(s)	Humans ; Patient Participation ; Research Personnel
Keywords	covid19
Language	English
Publishing date	2020-10-12
Publishing country	New Zealand
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2466680-4
ISSN	1178-1661 ; 1178-1653
ISSN (online)	1178-1661
ISSN	1178-1653
DOI	10.1007/s40271-020-00461-4
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Article ; Online: Involving Members of the Public in Health Economics Research: Insights from Selecting Health States for Valuation to Estimate Quality-Adjusted Life-Year (QALY) Weights.

Goodwin, Elizabeth / Boddy, Kate / Tatnell, Lynn / Hawton, Annie

Applied health economics and health policy

2017 Volume 16, Issue 2, Page(s) 187–194

Abstract: Over recent years, public involvement in health research has expanded considerably. However, public involvement in designing and conducting health economics research is seldom reported. Here we describe the development, delivery and assessment of an ... ...

Abstract	Over recent years, public involvement in health research has expanded considerably. However, public involvement in designing and conducting health economics research is seldom reported. Here we describe the development, delivery and assessment of an approach for involving people in a clearly defined piece of health economics research: selecting health states for valuation in estimating quality-adjusted life-years (QALYs). This involvement formed part of a study to develop a condition-specific preference-based measure of health-related quality of life, the Multiple Sclerosis Impact Scale (MSIS-8D), and the work reported here relates to the identification of plausible, or realistic, health states for valuation. An Expert Panel of three people with multiple sclerosis (MS) was recruited from a local involvement network, and two health economists designed an interactive task that enabled the Panel to identify health states that were implausible, or unlikely to be experienced. Following some initial confusion over terminology, which was resolved by discussion with the Panel, the task worked well and can be adapted to select health states for valuation in the development of any preference-based measure. As part of the involvement process, five themes were identified by the Panel members and the researchers which summarised our experiences of public involvement in this health economics research example: proportionality, task design, prior involvement, protectiveness and partnerships. These are described in the paper, along with their practical implications for involving members of the public in health economics research. Our experience demonstrates how members of the public and health economists can work together to improve the validity of health economics research. Plain Language Summary It has become commonplace to involve members of the public in health service research. However, published reports of involving people in designing health economics research are rare. We describe how we designed a way of involving people in a particular piece of health economics research.The aim of the work was to produce descriptions of different states of health experienced by people with multiple sclerosis (MS). These descriptions have since been rated in terms of how good or bad they are in a way that can be used by the National Institute for Health and Care Excellence (NICE) to make decisions about what services to fund on the NHS.We formed a panel of three people with MS, and designed a task to help the group produce health descriptions likely to be experienced by people with MS. After discussion about jargon, and working together to find more layman's terms, the task worked well, and can be adapted to produce health descriptions for any condition.We identified some key themes about working together that give insights into how members of the public can be involved in health economics research, and show the importance of their involvement in improving the relevance of this research.
MeSH term(s)	Community Participation/methods ; Economics, Medical ; Health Services Research/methods ; Humans ; Multiple Sclerosis/therapy ; Quality-Adjusted Life Years
Language	English
Publishing date	2017-10-18
Publishing country	New Zealand
Document type	Journal Article
ZDB-ID	2171420-4
ISSN	1179-1896 ; 1175-5652
ISSN (online)	1179-1896
ISSN	1175-5652
DOI	10.1007/s40258-017-0355-5
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Article ; Online: Development and testing of a medline search filter for identifying patient and public involvement in health research.

Rogers, Morwenna / Bethel, Alison / Boddy, Kate

Health information and libraries journal

2017 Volume 34, Issue 2, Page(s) 125–133

Abstract: Background: Research involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively.: Objective: To design a ... ...

Abstract	Background: Research involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively. Objective: To design a search filter to identify literature where patient and public involvement (PPI) was used in health research. Methods: A reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review. Results: The search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a 'real-life' systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%. Conclusion: The PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI.
MeSH term(s)	Biomedical Research ; Databases, Factual ; Humans ; Information Storage and Retrieval ; MEDLINE ; Patient Participation ; Public Sector ; Research ; Sensitivity and Specificity
Language	English
Publishing date	2017-01-01
Publishing country	England
Document type	Journal Article
ZDB-ID	2045997-X
ISSN	1471-1842 ; 1471-1834
ISSN (online)	1471-1842
ISSN	1471-1834
DOI	10.1111/hir.12157
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Article ; Online: Clarifying the roles of patients in research.

Liabo, Kristin / Boddy, Kate / Burchmore, Helen / Cockcroft, Emma / Britten, Nicky

BMJ (Clinical research ed.)

2018 Volume 361, Page(s) k1463

MeSH term(s)	Biomedical Research/ethics ; Humans ; Patient Participation ; Patient Rights/ethics ; Research Subjects/classification ; Terminology as Topic
Language	English
Publishing date	2018-04-10
Publishing country	England
Document type	Editorial
ZDB-ID	1362901-3
ISSN	1756-1833 ; 0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
ISSN (online)	1756-1833
ISSN	0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
DOI	10.1136/bmj.k1463
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