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

Trisha Greenhalgh; Lisa Hinton; Teresa Finlay; Alastair Macfarlane; Nick Fahy; Ben Clyde; Alan Chant

doi:10.1111/hex.12888

Frameworks for supporting patient and public involvement in research

Systematic review and co‐design pilot

Bibliographic Data

ID	21148552
Authors	Trisha Greenhalgh (0000-0003-2369-8088, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK), Lisa Hinton (0000-0002-6082-3151, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK), Teresa Finlay (0000-0003-2538-8366, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK), Alastair Macfarlane (North Central London Academic Foundation Programme London UK), Nick Fahy (0000-0003-4957-0189, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK), Ben Clyde (Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK), Alan Chant (Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK)
Year	2019
Volume	22
Issue	4
Pages	785-801
Publication date	2019-08-01
Peer Reviewed	Yes
Open Access	Yes
Type	ARTICLE
Venue	Health Expectations (JOURNAL)
Journal identifiers	ISSN: 1369-6513 • E-ISSN: 1369-7625
Publisher	Wiley (PUBLISHER • GB)
DOI	10.1111/hex.12888
Language	EN
Citations received	168
References cited	83

Involving Patients in Pharmacoepidemiology Studies Conducted on Healthcare Administrative Database
Open AccessJulie Rigoureau, Manon Verroul et al.Health Expectations2026
Embedding Consumer‐Led Research in a Comprehensive Cancer Centre Alliance
Open AccessLucy Boyd, Charles Nightingale et al.Health Expectations2026
Involving People With Dementia in Research
Open AccessJörg Meisser, Susanne de Wolf‐Linder et al.Health Expectations2026
The role of lived and living experience in evidence-based decision-making in suicide prevention
Open AccessMax Tran, Jaelea Skehan et al.Health Promotion International2026
Co-Production as a Site for Negotiation
Open AccessLaura Tinner, Emma Rigby et al.International Journal of…2026
Bridging Lived and Expert Experience
Open AccessPiotr Teodorowski, Beth J Maclin et al.Health Expectations2026
Embedding Equity, Transparency, and Impact Through Patient and Public Involvement
Open AccessMadhavi Kondapuram Seshu, Judith Humphreys et al.Health Expectations2026
Educators, Not Influencers
Open AccessMelissa Kramer, Bianca Serio et al.Health Expectations2026
Co‐Producing Training Resources to Improve Healthcare Experiences for Young Women and Reduce Gendered Health Inequalities
Open AccessAna Alonso Curbelo, Emma Rigby et al.Health Expectations2026
“ There Was a Light Bulb Moment ”
Open AccessAmanda Dominello, S Lu et al.Health Expectations2026
Stakeholder Experiences in Participatory Mental Health Model Development
Open AccessMaartje Vriens, H A Valkenburg et al.Health Expectations2026
Laying the Foundations for Co‐Design
Open AccessLouise Wiles, Aaron Davis et al.Health Expectations2026
Public‐Facing Short Videos on Paediatric General Anaesthesia and Child Neurodevelopment
Open AccessChong Xu, Yuchang Fang et al.Health Expectations2026
Guidelines, Frameworks, and Trainings on Lived Experience and Caregiver Engagement in Research
Open AccessLisa D Hawke, Hannah Burgé Luviano et al.Health Expectations2026
Better Healthcare Together
Open AccessAdrienne M Young, Anja Christoffersen et al.Health Expectations2026
Co‐Design for Equity, Inclusion and Engagement
Open AccessIrene Sarasua, Lorelli Nowell et al.Health Expectations2026
Strengthening health literacy research through consumer engagement
Open AccessJulie Ayre, Eliza Ferguson et al.Health Promotion International2025
Conversing with theory in context
Open AccessSevgi E Fruytier, Cathelijn van Baar et al.Science and Public Policy2026
Using ethnographic approaches to document, evaluate, and facilitate virtual community-engaged implementation research
Open AccessBorsika A Rabin, Kelli L Cain et al.BMC Public Health2023
Early Implementation and Evaluation of StepUp for Dementia Research
Open AccessYun-Hee Jeon, Mirim Shin et al.International Journal of…2021
Patient engagement in quality of life research
Open AccessNatasha Roberts, Sandra Zelinsky et al.Quality of Life Research2024
Co-design of Guidance for Patient and Public Involvement in Psychedelic Research
Open AccessJames B Close, Julia Bornemann et al.Frontiers in Psychiatry2021
Developing a minifesta for effective academic-activist collaboration in the context of the climate emergency
Open AccessDuncan P Mclaren, Christine Anderson et al.Frontiers in Education2024
Factors influencing malnutrition among adolescent girls in The Gambia
Open AccessHaddy Jallow-Badjan, Tanefa A Apekey et al.BMC Public Health2025
A framework for remotely enabled co-design with young people
Open AccessAnna Morris, Anna Charlotte Morris et al.Frontiers in Psychiatry2024
What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again
Open AccessBarbara Groot, Annyk Haveman et al.International Journal of…2022
Towards Inclusive Healthcare Delivery
Open AccessCatharina Thiel Sandholdt, Jason Cunningham et al.International Journal of…2020
Researcher Perceptions of Involving Consumers in Health Research in Australia
Open AccessJoan Carlini, Rachel Muir et al.International Journal of…2023
Hopeless but supported in that hopelessness”
Open AccessSophia Fedorowicz, Robert C Dempsey et al.Frontiers in Psychiatry2026
Improving access to co-design through remote, adapted, and asynchronous approaches
Open AccessAaron Davis, Ciara Shiggins et al.CoDesign2026
Co‐Producing Equitable Perinatal Mental Health Care
Open AccessElena Sheldon, Elena M Sheldon et al.Health Expectations2026
Your Time, Whose Science? On Tempo Reviewability in Human Movement Research
Open AccessAndré RamalhoQuest2026
Incorporating patient and public involvement (PPI) at the design stage of an early career physiotherapy researcher's funding application
Open AccessJacqueline Bennion, Roger Garrett et al.Social Sciences & Humanities Open2024
Co-design with affect stories and applied ethics for health technologies
Open AccessAmbre Davat, Fabienne Martin-Juchat et al.Frontiers in Communication2024
The sepsis journey and where digital alerts can help
Open AccessRuna Lazzarino, Aleksandra Borek et al.Frontiers in Public Health2025
Meaningful public involvement
Open AccessTomasz Krawczyk, Jan Piasecki et al.Frontiers in Public Health2025
Citizen science for research in public health
Open AccessHatem H Alsaqqa, Abdallah AlwawiFrontiers in Public Health2025
Knowledge, attitude, and practice of orthopedic surgery patients regarding the prevention and treatment of venous thromboembolism
Open AccessJie Wu, Xuefen Li et al.Frontiers in Public Health2026
The public and patient involvement imperative in Ireland
Open AccessMeghan Gilfoyle, Anne Macfarlane et al.Frontiers in Public Health2022
Citizen Consultation on Problematic Usage of the Internet
Open AccessBiljana Gjoneska, Julia Jones et al.Frontiers in Public Health2021
Measurable outcomes of consumer engagement in health research
Open AccessEmily DeBortoli, H Peter Soyer et al.Frontiers in Public Health2022
Understanding family caregiving and well-being in adult chronic illness
Open AccessBettina Schwind, Rosa M S Visscher et al.Frontiers in Public Health2025
Improving adult behavioural weight management services for diverse UK Black Caribbean and Black African ethnic groups
Open AccessMaria Maynard, Oritseweyinmi Orighoye et al.Frontiers in Public Health2023
Ask the people
Open AccessSid Kaladharan, Miranda E Vidgen et al.BMJ Global Health2021
‘A commitment to Equality, Diversity and Inclusion’
Open AccessSapfo Lignou, Mark Sheehan et al.Research Ethics2024
Mapping Participatory Approaches in Health Care Provision for Older Immigrants in Europe
Open AccessAbdallah Abudayya, Büşra Nur Temür et al.Journal of Immigrant and Minority…2026
Patients as Co‐Researchers in Oncology
Open AccessYaël Busnel, Aline Rollet et al.Health Expectations2026
Holding Complex Spaces Through Relational Work
Open AccessBirgit Heckemann, E Varkey et al.Health Expectations2026
Living with a multimorbidity. A qualitative study on the personal perspectives of individuals with type 2 diabetes and cardiovascular disease
Open AccessJessica E Brown, Lisa Newson et al.Psychology & Health2025
The participatory turn in Swedish ageing research
Open AccessSara HultqvistEducational Gerontology2021
The writer's voice repertoire
Open AccessLorelei Lingard, Chris Watling et al.Medical Education2024
Organising and managing patient and public involvement to enhance quality improvement—Comparing a Swedish and a Dutch hospital
Open AccessCarolina Bergerum, Maria Wolmesjö et al.Health Policy2022
Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations
Open AccessHenrike J Westerink, Tom Oirbans et al.Health Policy2023
“Nothing about us, without us”? A qualitative study of service user involvement in the development of lay-delivered psychological interventions in contexts affected by humanitarian crises
Open AccessEmily Owen, Alessandro Massazza et al.Journal of Migration and Health2022
Co-producing rapid research
Open AccessKaren Machin, Prisha Shah et al.Frontiers in Sociology2023
Co-designing an Integrated Health and Social Care Hub With and for Families Experiencing Adversity
Open AccessTeresa Hall, Sarah Loveday et al.International Journal of…2023
The language of vaccination campaigns during Covid-19
Open AccessSara Vilar-Lluch, Emma Mcclaughlin et al.Medical Humanities2023
Ecosystem-based management of coral reefs from afar – A guide for remote scientists and remote places
Open AccessBenjamin Cowburn, Khatija Alliji et al.Environmental Science & Policy2022
Involving people with experience of dementia in analysis of video recorded doctor-patient-carer interactions in care homes
Jemima DooleyInternational Journal of Social…2020
Mental Health Family Carer Coresearchers
Open AccessCaroline Walters, Sharon Lawn et al.Research on Social Work Practice2025
Barriers and enablers to consumer and community involvement in research and healthcare improvement
Open AccessDarshini Ayton, Sandra Braaf et al.Health & Social Care in the…2021
Between data providers and concerned citizens
Open AccessNolwenn Buhler, Annika Frahsa et al.Public Understanding of Science2024
Co-designing a nature play program for culturally and linguistically diverse children and primary carers
Open AccessErnesta Sofija, Natalie Reyes Bernard et al.Wellbeing Space and Society2024
Navigating a Decade of Integrated Care Research in the International Journal of Integrated Care
Open AccessJessica Michgelsen, Nick Zonneveld et al.International Journal of…2025
Health and healthcare as the context for participatory action research
Open AccessSofia Kjellström, Ann Elizabeth Mitchell et al.Action Research2019
People powered research
Open AccessChristopher Cartwright, Aamnah Rahman et al.International Journal for Equity…2023
Co-design of a systematic review
Open AccessRosiel Elwyn, Tessa‐May Zirnsak et al.Critical Public Health2026
Pesquisar para quê
Open AccessLeonardo Ferreira Fontenelle, Thiago Dias SartiRevista Brasileira de Medicina de…2020
Exploring the perspectives and practices of humanitarian actors towards the Participation Revolution in humanitarian digital health responses
Open AccessJennifer Benson, 一夫岡部 et al.Globalization and Health2024
The dynamic nature of patient engagement within a Canadian patient‐oriented kidney health research network
Open AccessMeghan J Elliott, Tamara L McCarron et al.Health Expectations2023
Towards Meaningful Consumer and Community Involvement in Health Research
Open AccessKimberley A Baxter, Jennifer Muller et al.Health Expectations2026
Continuity Is Essential
Open AccessDeirdre McGowan, Deirdre A McGowan et al.Health Expectations2025
Development of the Engage with Impact Toolkit
Open AccessJulia Abelson, Laura Tripp et al.Health Expectations2023
Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study
Open AccessEmma Cockcroft, Vidhi Bassi et al.Health Expectations2024
Best Practice Principles to Work With Consumer Representatives on Patient Safety Investigation Teams
Open AccessYinghua Yu, Charlotte J Molloy et al.Health Expectations2026
Patient and public involvement in international research
Open AccessShirin Vellani, Marie-Lee Yous et al.Health Expectations2024
A co‐designed framework to support and sustain patient and family engagement in health‐care decision making
Open AccessTamara L McCarron, Thomas Noseworthy et al.Health Expectations2020
Promoting ‘testicular awareness’
Open AccessMohamad M Saab, Varsha N Shetty et al.Health Expectations2024
Patient and public involvement in preclinical and medical research
Open AccessRobyn A Smith, Judith Slocombe et al.Health Expectations2024
Using social media for patient and public involvement and engagement in health research
Open AccessSophia Fedorowicz, Victoria Riley et al.Health Expectations2022
The Youth Patient and Public Involvement Café—A youth‐led model for meaningful involvement with children and young people
Open AccessAbigail Thomson, Edward Peasgood et al.Health Expectations2022
Co‐Designing a Social Media and Anxiety Survey
Open AccessSharon Lawn, Kerri Gillespie et al.Health Expectations2026
Frameworks to Evaluate the Quality of Public Involvement in Health and Social Care Research
Open AccessRose Hutton, Alice Moult et al.Health Expectations2026
How Do Participatory Citizenship Models Inform Co‐production in Health Research? A Systematic Review
Open AccessCATHARINE S ROSE, Lois Donnelly et al.Health Expectations2025
Patient and public involvement in doctoral research
Open AccessNia Coupe, A McL MathiesonHealth Expectations2020
Frameworks Used to Engage Postsecondary Students in Campus Mental Health Research
Open AccessKristin Cleverley, Soha Salman et al.Health Expectations2025
A framework for involving coproduction partners in research about young people with type 1 diabetes
Open AccessJane Desborough, Anne Parkinson et al.Health Expectations2022
Mapping the role of patient and public involvement during the different stages of healthcare innovation
Open AccessCluley, Alexandra Ziemann et al.Health Expectations2022
Patients as partners in health research
Open AccessTamara L McCarron, Fiona Clement et al.Health Expectations2021
Community Engagement in Long Covid Research
Open AccessMargaret E O'Hara, Kiera McDuff et al.Health Expectations2025
Methods for Involving People With Dementia in Health Policy and Guideline Development
Open AccessFelix Bühler, Jennifer Geyer et al.Health Expectations2025
Consumer Involvement in the Design and Development of Medication Safety Interventions or Services in Primary Care
Open AccessMegan DelDot, Esther Lau et al.Health Expectations2024
A framework for implementing Patient and Public Involvement in mental health research
Open AccessLora Capobianco, C Faija et al.Health Expectations2023
The patient representation struggle during the Covid‐19 pandemic
Open AccessHester Van De Bovenkamp, B De Graaff et al.Health Expectations2024
Co‐Production With Mental Health Family Carers
Open AccessCaroline Walters, Melissa Petrakis et al.Health Expectations2026
Patient and Public Involvement of young people with a chronic condition in projects in health and social care
Open AccessF van Schelven, Hennie Boeije et al.Health Expectations2020
Reimagining consumer involvement
Open AccessPatti Shih, Laila Hallam et al.Health Expectations2022
Users' and researchers' construction of equity in research collaboration
Open AccessSusanne Stuhlfauth, Ingrid Ruud Knutsen et al.Health Expectations2020
Peer supporters' mental health and emotional wellbeing needs
Open AccessLaura Kane, Robert M Portman et al.Health Expectations2023
Introducing physician associates to hospital patients
Open AccessFrancesca Taylor, Jonathan Ogidi et al.Health Expectations2021

Unique citing works	168
Citations per year	24
Citation span	2019 - 2026 (8)
Citation velocity	current
Highly cited	Yes
Citation types	Neutral: 155