Articles

Family perspectives of COVID-19 research

The COVID-19 pandemic has uniquely affected children and families by disrupting routines, changing relationships and roles, and altering usual child care, school and recreational activities. Understanding the ...

Authors: Shelley M. Vanderhout, Catherine S. Birken, Peter Wong, Sarah Kelleher, Shannon Weir and Jonathon L. Maguire

Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study

The James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. The method is increasingly used but publications primarily discuss the outcome of such projects...

Authors: Karin Jongsma, Juliette van Seventer, Anouk Verwoerd and Annemiek van Rensen

Hearing Norton Sound: community involvement in the design of a mixed methods community randomized trial in 15 Alaska Native communities

Community involvement is important in good research practice. We led a community-based study to improve early detection and treatment of childhood hearing loss in rural Alaska. This study evaluated a cell phon...

Authors: Samantha Kleindienst Robler, S. Meade Inglis, Joseph J. Gallo, Heather E. Parnell, Paul Ivanoff, Stephanie Ryan, Cole D. Jenson, Alexandra Ross, Alain Labrique, Nae-Yuh Wang and Susan D. Emmett

Engaging patients and family members to design and implement patient-centered kidney disease research

We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in re...

Authors: Teri Browne, Amy Swoboda, Patti L. Ephraim, Katina Lang-Lindsey, Jamie A. Green, Felicia Hill-Briggs, George L. Jackson, Suzanne Ruff, Lana Schmidt, Peter Woods, Patty Danielson, Shakur Bolden, Brian Bankes, Chelsie Hauer, Tara Strigo and L. Ebony Boulware

Patients’ engagement in primary care research: a case study in a Canadian context

Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the ...

Authors: Divya Kanwar Bhati, Michael Fitzgerald, Claire Kendall and Simone Dahrouge

Embedding consumer and community involvement within an established research centre: moving from general recommendations to an actionable framework

Involving consumers and community members in the research process is an important step towards developing and delivering effective, person-centered health care. The National Health and Medical Research Council...

Authors: Tilini Gunatillake, Cade Shadbolt, Daniel Gould, Michelle Lam, Marion Glanville Hearst, Carol Vleeskens, Peter Choong and Michelle Dowsey

The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to...

Authors: Jill Russell, Nina Fudge and Trish Greenhalgh

Involving research participants in a pan-European research initiative: the EPAD participant panel experience

Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well a...

Authors: S. Gregory, E. M. Bunnik, A. B. Callado, I. Carrie, C. De Boer, J. Duffus, K. Fauria, S. Forster, D. Gove, I. Knezevic, A. Laquidain, D. Pennetier, S. Saunders, S. Sparks, J. Rice, C. W. Ritchie…

Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials

Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the devel...

Authors: Madison Foster, Dean A Fergusson, Terry Hawrysh, Justin Presseau, Natasha Kekre, Stuart Schwartz, Gisell Castillo, Sarah Asad, Grace Fox, Harold Atkins, Kednapa Thavorn, Joshua Montroy, Robert A Holt, Zarah Monfaredi and Manoj M Lalu

Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement

There is growing interest in patient and stakeholder engagement in research, yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patien...

Authors: Andrea Heckert, Laura P. Forsythe, Kristin L. Carman, Lori Frank, Rachel Hemphill, Emily A. Elstad, Laura Esmail and Julie Kennedy Lesch

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

Background

Authors: Femke van Schelven, Eline van der Meulen, Noortje Kroeze, Marjolijn Ketelaar and Hennie Boeije

“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about t...

Authors: Caroline Jose, Patricia George-Zwicker, Louise Tardif, Aaron Bouma, Darlene Pugsley, Luke Pugsley, Mathieu Bélanger, Jeffrey Gaudet and Marc Robichaud

Maternal and newborn health priority setting partnership in rural Uganda in association with the James Lind Alliance: a study protocol

Maternal and newborn deaths and ill health are relatively common in low income countries, but can adequately be addressed through locally, collaboratively designed, and responsive research. This has the potent...

Authors: James Ditai, Monicah Nakyazze, Deborah Andrinar Namutebi, Proscovia Auma, Martin Chebet, Cynthia Nalumansi, Grace Martha Nabulo, Kenneth Mugabe, Toto Anne Gronlund, Anthony Mbonye and Andrew D. Weeks

Exploring patient and public involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme

Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the impo...

Authors:

The development of a scheme of Public & Patient Involvement (PPI) in the Wales Cancer Research Centre (WCRC) and reflections on the process

The Wales Cancer Research Centre (WCRC) was established in 2015. It made an early and strong commitment to Public and Patient Involvement (PPI) in all its work. That commitment was made manifest through the im...

Authors: Jim Fitzgibbon, Kate Cleary and Annmarie Nelson

“They heard our voice!” patient engagement councils in community-based primary care practices: a participatory action research pilot study

Patient engagement could improve the quality of primary care practices. However, we know little about effective patient engagement strategies. We aimed to assess the acceptability and feasibility of embedding ...

Authors: Julie Haesebaert, Isabelle Samson, Hélène Lee-Gosselin, Sabrina Guay-Bélanger, Jean-François Proteau, Guy Drouin, Chantal Guimont, Luc Vigneault, Annie Poirier, Priscille-Nice Sanon, Geneviève Roch, Marie-Ève Poitras, Annie LeBlanc and France Légaré

‘All hands-on deck’, working together to develop UK standards for public involvement in research

Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public inv...

Authors: Sally Crowe, Ade Adebajo, Hothan Esmael, Simon Denegri, Angela Martin, Bob McAlister, Barbara Moore, Martin Quinn, Una Rennard, Julie Simpson, Paula Wray and Philippa Yeeles

Partnering with frail or seriously ill patients in research: a systematic review

The expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from ...

Authors: Claire Ludwig, Ian D. Graham, Wendy Gifford, Josee Lavoie and Dawn Stacey

Informing the development of an E-platform for monitoring wellbeing in schools: involving young people in a co-design process

The use of new technologies and methodologies in young people’s mental health research is needed to allow more frequent and reliable sampling. Mobile applications and e-platforms create exciting potential for ...

Authors: Claire Grant, Emily Widnall, Lauren Cross, Emily Simonoff and Johnny Downs

Educational content and challenges encountered when training service user representatives as peer researchers in a mixed study on patient experience of hospital safety

In France, following the passing of a 2002 law, service user representatives (SURs) are part of hospital committees in charge of care quality and safety issues. Ten service user representatives (SURs) were rec...

Authors: O. Gross, N. Garabedian, C. Richard, M. Citrini, T. Sannié and R. Gagnayre

Impact of community engagement and social support on the outcomes of HIV-related meningitis clinical trials in a resource-limited setting

Clinical trials remain the cornerstone of improving outcomes for HIV-infected individuals with cryptococcal meningitis. Community engagement aims at involving participants and their advocates as partners in re...

Authors: Richard Kwizera, Alisat Sadiq, Jane Frances Ndyetukira, Elizabeth Nalintya, Darlisha Williams, Joshua Rhein, David R. Boulware and David B. Meya

BRIGHTLIGHT researchers as ‘dramaturgs’: creating There is a Light from complex research data

BRIGHTLIGHT is a national evaluation of cancer services for young people aged 13–24 years in England. It is a mixed methods study with six interlinked studies aiming to answer the question: do specialist cance...

Authors: Rachel M. Taylor, Brian Lobel, Keisha Thompson, Adura Onashile, Mark Croasdale, Nathaniel Hall, Faith Gibson, Ana Martins, David Wright, Sue Morgan, Jeremy S. Whelan and Lorna A. Fern

Global Health in Preconception, Pregnancy and Postpartum Alliance: development of an international consumer and community involvement framework

The goal of the Global Health in Preconception, Pregnancy and Postpartum (HiPPP) Alliance, comprising consumers and leading international multidisciplinary academics and clinicians, is to generate research and...

Authors: Heidi J. Bergmeier, Virginia Vandall-Walker, Magdalena Skrybant, Helena J. Teede, Cate Bailey, Jo-Anna B. Baxter, Ana Luiza Vilela Borges, Jacqueline A. Boyle, Ayesha Everitt, Cheryce L. Harrison, Margely Herrera, Briony Hill, Brian Jack, Samuel Jones, Laura Jorgensen, Siew Lim…

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects

The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and...

Authors: Éidín Ní Shé, Jennifer Cassidy, Carmel Davies, Aoife De Brún, Sarah Donnelly, Emma Dorris, Nikki Dunne, Karen Egan, Michel Foley, Mary Galvin, Mary Harkin, Martha Killilea, Thilo Kroll, Vanessa Lacey, Veronica Lambert, Sarah McLoughlin…

Innovative solutions to enhance safe and green environments for ageing well using co-design through patient and public involvement

There is a need to develop innovative solutions to enhance safe and green physical environments, which optimise health, wellbeing and community participation among older adults. To develop solutions that meet ...

Authors: Anna L. Hatton, Catherine Haslam, Sarah Bell, Joe Langley, Ryan Woolrych, Corrina Cory, James M. W. Brownjohn and Victoria A. Goodwin

Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative

Patient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not ref...

Authors: Marie-Claude Tremblay, Maude Bradette-Laplante, Danielle Bérubé, Élaine Brière, Nicole Moisan, Daniel Niquay, Maman-Joyce Dogba, France Légaré, Alex McComber, Jonathan McGavock and Holly O. Witteman

The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial

The interest in patient and public involvement (PPI) in health research is increasing. However, the experience and knowledge of PPI throughout the entire research process and especially in the analysis are lim...

Authors: Pernille Christiansen Skovlund, Berit Kjærside Nielsen, Henriette Vind Thaysen, Henrik Schmidt, Arnstein Finset, Kristian Ahm Hansen and Kirsten Lomborg

Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

Critical stakeholder-identified gaps in current health research engagement strategies include the exclusion of voices traditionally less heard and a lack of consideration for the role of trauma in lived experi...

Authors: P. Roche, C. Shimmin, S. Hickes, M. Khan, O. Sherzoi, E. Wicklund, J. G. Lavoie, S. Hardie, K. D. M. Wittmeier and K. M. Sibley

What happens after James Lind Alliance Priority Setting Partnerships? A qualitative study of contexts, processes and impacts

The James Lind Alliance (JLA) supports priority setting partnerships (PSPs) in which patients, carers and health professionals collaborate to identify a Top 10 list of research priorities. Few studies have exa...

Authors: Kristina Staley, Sally Crowe, Joanna C. Crocker, Mary Madden and Trisha Greenhalgh

The role of patient and public involvement leads in facilitating feedback: “invisible work”

Health research in the UK requires patients, those with lived experience and members of the public to be involved in designing and shaping research: many of them have reported that their comments and suggestio...

Authors: Elspeth Mathie, Nigel Smeeton, Diane Munday, Graham Rhodes, Helena Wythe and Julia Jones

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health resea...

Authors: Lidewij Eva Vat, Mike Warren, Susan Goold, Everard (Bud) Davidge, Nicole Porter, Tjerk Jan Schuitmaker-Warnaar, Jacqueline E. W. Broerse and Holly Etchegary

Guidance on authorship with and acknowledgement of patient partners in patient-oriented research

The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates pat...

Authors: Dawn P. Richards, Kathryn A. Birnie, Kathleen Eubanks, Therese Lane, Delane Linkiewich, Lesley Singer, Jennifer N. Stinson and Kimberly N. Begley

Realist evaluation of public engagement and involvement in data-intensive health research

High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of th...

Authors: Georgina Hobbs and Mary P. Tully

PPI Or User Involvement: Taking stock from a service user perspective in the twenty first century

Authors: Peter Beresford

Prioritising target non-pharmacological interventions for research in Parkinson’s disease: achieving consensus from key stakeholders

In 2014 Parkinson’s UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be dev...

Authors: Angeliki Bogosian, Lorna Rixon and Catherine S. Hurt

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

There are increasing calls for patient involvement in sharing health research results, but no evidence-based recommendations to guide such involvement. Our objectives were to: (1) conduct a systematic review o...

Authors: Lauri Arnstein, Anne Clare Wadsworth, Beverley Anne Yamamoto, Richard Stephens, Kawaldip Sehmi, Rachel Jones, Arabella Sargent, Thomas Gegeny and Karen L. Woolley

What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration

Exchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners...

Authors: Emma Hovén, Lars Eriksson, Åsa Månsson D’Souza, Johanna Sörensen, David Hill, Carolin Viklund, Lena Wettergren and Claudia Lampic

Co-creating a patient and public involvement and engagement ‘how to’ guide for researchers

Research should benefit society at large. Involving citizens those who are affected by research may not only increase the quality, but can also push research towards generating greater societal benefits and re...

Authors: Raphaela E. Kaisler and Benjamin Missbach

The “PPI Hawker”: an innovative method for patient and public involvement (PPI) in health research

Patient and Public Involvement (PPI) in health research entails doing research ‘with’ the public. Successful PPI requires a diversity of patients’ perspectives and experiences. In Singapore, including the publ...

Authors: L. Luna Puerta and H. E. Smith

Designing a tool to support patient and public involvement in research projects: the Involvement Matrix

Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-eviden...

Authors: Dirk-Wouter Smits, Karen van Meeteren, Martijn Klem, Mattijs Alsem and Marjolijn Ketelaar

The impact of active research involvement of young children in the design of a new stereotest

Although considered important, the direct involvement of young children in research design is scarce and to our knowledge its impact has never been measured. We aim to demonstrate impact of young children’s in...

Authors: Therese Casanova, Carla Black, Sheima Rafiq, Jessica Hugill-Jones, Jenny C. A. Read and Kathleen Vancleef

Musculoskeletal pain stakeholder engagement and partnership development: determining patient-centered research priorities

Musculoskeletal (MSK) pain is a global public health problem with increased societal burden. Increased attention has focused toward patient and other stakeholder perspectives when determining future MSK pain r...

Authors: Jason M. Beneciuk, Dorothy Verstandig, Chuck Taylor, Doug Scott, Joan Levin, Raine Osborne, Joel E. Bialosky, Trevor A. Lentz, Tava Buck, Anita L. Davis, Christina Harder, Monika B. Beneciuk, Virgil Wittmer, James Sylvester, Robert Rowe, David McInnes…

Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study

Although participatory research is known to have advantages, it is unclear how participatory research can best be performed. This study aims to report on lessons learned in collaboration with service users involv...

Authors: Aukelien Scheffelaar, Nanne Bos, Marjan de Jong, Mattanja Triemstra, Sandra van Dulmen and Katrien Luijkx

Opening the door: inviting youth and parent perspectives on youth mental health emergency department use

Canadian Emergency Departments (EDs) have seen increasing use by children and youth for mental health concerns in recent years. This trend is likely a result of several complex factors, and researcher-posed po...

Authors: Leslie Anne Campbell, David Lovas, Ellen Withers and Kylie Peacock

Identifying best approaches for engaging patients and family members in health informatics initiatives: a case study of the Group Priority Sort technique

Patient engagement strategies in health service delivery have become more common in recent years. However, many healthcare organizations are challenged in identifying the best methods to engage patients in hea...

Authors: Brian Lo, Timothy Zhang, Kevin Leung, Rohan Mehta, Craig Kuziemsky, Richard G. Booth, Anna Chyjek, Sarah Collins Rossetti, Drew McLean, Elizabeth Borycki, David McLay, Justin Noble, Shawn Carter and Gillian Strudwick

Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the Translating Research in Elder Care (TREC) Program

The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of...

Authors: Stephanie A. Chamberlain, Carole A. Estabrooks, Janice M. Keefe, Matthias Hoben, Charlotte Berendonk, Kyle Corbett and Andrea Gruneir

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the publi...

Authors: Shoba Dawson, Angela Ruddock, Veena Parmar, Rebecca Morris, Sudeh Cheraghi-Sohi, Sally Giles and Stephen Campbell

A protocol for co-creating research project lay summaries with stakeholders: guideline development for Canada’s AGE-WELL network

Funding bodies increasingly require researchers to write lay summaries to communicate projects’ real-world relevance to the public in an accessible way. However, research proposals and findings are generally n...

Authors: Mineko Wada, Judith Sixsmith, Gail Harwood, Theodore D. Cosco, Mei Lan Fang and Andrew Sixsmith

Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunit...

Authors: C. Mitchell, K. Burke, N. Halford, K. Rothwell, S. Darley, K. Woodward-Nutt, A. Bowen and E. Patchwood

Learning about how public involvement strengthens HIV research as a medical student

A small medical school research project entitled ‘PPI to strengthen clinical and population health research’ caused me to look at an entirely new field – that of Public and Patient Involvement (PPI). PPI is the d...

Authors: Joseph Lewis