Articles

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

Ensuring young voices are heard in core outcome set development: international workshops with 70 children and young people

Researchers test treatments to ensure these work and are safe. They do this by studying the effects that treatments have on patients by measuring outcomes, such as pain and quality of life. Often research team...

Authors: Frances C. Sherratt, Heather Bagley, Simon R. Stones, Jenny Preston, Nigel J. Hall, Sarah L. Gorst and Bridget Young

Comparing three approaches for involving patients in research prioritization: a qualitative study of participant experiences

By participating in priority-setting activities in research, patients and members of the public help ensure that important questions are incorporated into future research agendas. Surveys, focus groups, and on...

Authors: Danielle C. Lavallee, Sarah O. Lawrence, Andrew L. Avins, David R. Nerenz, Todd C. Edwards, Donald L. Patrick, Zoya Bauer, Anjali R. Truitt, Sarah E. Monsell, Mary R. Scott and Jeffrey G. Jarvik

Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise

People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people exp...

Authors: D. Cavers, S. Cunningham-Burley, E. Watson, E. Banks and C. Campbell

Taking guidance from parents involved in a longitudinal birth cohort – the ROLO family advisory committee

The ROLO Study (Randomised cOntrol trial of a Low glycaemic index diet in pregnancy to prevent macrosomia) was a randomised control trial conducted between 2007 and 2011 to examine if a low glycaemic index (GI...

Authors: N. M. Walsh, E. C. O’Brien, A. A. Geraghty, D. F. Byrne, A. Whelan, S. Reilly, S. Murray, C. Reilly, E. Adams, P. M. Farnan and F. M. McAuliffe

Imaging in clinical trials: a patient-led questionnaire study to assess impact of imaging regimes on patient participation

Cancer trials often incorporate intensive imaging with Magnetic Resonance Imaging (MRI) and Positron Emission Tomography with Computerised Tomography (PET/CT), which can be physically and mentally exhausting f...

Authors: Katherine May, Martin Lee, Monica Jefford, Ana Ribeiro, Alison Macdonald, Veronica Morgan, Marianne Usher and Nandita M. de Souza

An annotated and critical glossary of the terminology of inclusion in healthcare and health research

The importance of including members of the public has been accorded a significant position in health planning, service delivery and research. But this position masks a lack of clarity about terms that are used...

Authors: Shahid Islam and Neil Small

“PROUD to have been involved”: an evaluation of participant and community involvement in the PROUD HIV prevention trial

The PROUD trial, a HIV prevention trial in men who have sex with men and trans women, set out to involve community representatives and trial participants in several ways. PROUD also aimed to evaluate participa...

Authors: Mitzy Gafos, Annabelle South, Bec Hanley, Elizabeth Brodnicki, Matthew Hodson, Sheena McCormack, T. Charles Witzel, Justin Harbottle and Claire Vale

Between funder requirements and ‘jobbing scientists’: the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerm...

Authors: Joanne Evans and Stan (Constantina) Papoulias

Public involvement in health research: what does ‘good’ look like in practice?

Background

Authors: Kristin Liabo, Kate Boddy, Silvia Bortoli, Jenny Irvine, Heather Boult, Mary Fredlund, Neil Joseph, Gretchen Bjornstad and Christopher Morris

Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study

An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such coll...

Authors: Tommy Carlsson, Ulla Melander Marttala and Elisabet Mattsson

Parenting Science Gang: radical co-creation of research projects led by parents of young children

Parents are increasingly searching online for information supported by research but can find it difficult to identify results relevant to their own experiences. More troublingly, a number of studies indicate t...

Authors: Sophia Collins, Rebecca Brueton, Tamasin Greenough Graham, Stephanie Organ, Amy Strother, Sarah Elizabeth West and Jean McKendree

Open to the public: paywalls and the public rationale for open access medical research publishing

Public voices have largely been absent from the discussions about open access publishing in medical research. Yet the public have a strong interest in ensuring open access of medical research findings because ...

Authors: Suzanne Day, Stuart Rennie, Danyang Luo and Joseph D. Tucker

The Canadian retinoblastoma research advisory board: a framework for patient engagement

Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with...

Authors: Maxwell J. Gelkopf, Iva Avramov, Richelle Baddeliyanage, Ivana Ristevski, Sarah A. Johnson, Kaitlyn Flegg and Helen Dimaras

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients’ needs. Though PPI is increasingly evident in clinical and health services researc...

Authors: Rebecca Birch, Gwenda Simons, Heidi Wähämaa, Catherine M. McGrath, Eva C. Johansson, Diana Skingle, Kerin Bayliss, Bella Starling, Danielle M. Gerlag, Christopher D. Buckley, Rebecca J. Stack, Karim Raza and Marie Falahee

A community-driven and evidence-based approach to developing mental wellness strategies in First Nations: a program protocol

Mental health, substance use/addiction and violence (MSV) are important issues affecting the well-being of Indigenous People in Canada. This paper outlines the protocol for a research-to-action program called ...

Authors: Melody Morton Ninomiya, Ningwakwe (Priscilla) George, Julie George, Renee Linklater, Julie Bull, Sara Plain, Kathryn Graham, Sharon Bernards, Laura Peach, Vicky Stergiopoulos, Paul Kurdyak, Gerald McKinley, Peter Donnelly and Samantha Wells

Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review

Background

Authors: Noreen Frisch, Pat Atherton, Mary M. Doyle-Waters, Martha L. P. MacLeod, Anastasia Mallidou, Vanessa Sheane, John Ward and Jinelle Woodley

Exploring the perspectives of community members as research partners in rural and remote areas

Community engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased b...

Authors: Chelsea A. Pelletier, Anne Pousette, Kirsten Ward and Gloria Fox

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol

Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how b...

Authors: Sisay Abayneh, Heidi Lempp and Charlotte Hanlon

Learning from patient involvement in a clinical study analyzing PET/CT in women with advanced breast cancer

Despite increasing interest in patient involvement in health care research, researchers may be uncertain about the benefits of involving patients in the design and conduction of clinical studies. We aimed to e...

Authors: Marianne Vogsen, Susanne Geneser, Marie Lykke Rasmussen, Mogens Hørder and Malene Grubbe Hildebrandt

Group based video-conferencing for adults with depression: findings from a user-led qualitative data analysis using participatory theme elicitation

Accessing support services for depression has been historically difficult given the societal stigma that exists regarding the condition. Recent advances in digital technologies continue to be postulated as a p...

Authors: Paul Best, Tracey McConnell, Gavin Davidson, Jennifer Badham and Ruth D. Neill

Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research

Research is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather th...

Authors: Jill D. Nault Connors, Marshall J. Conley and Laura S. Lorenz

Patients’ and researchers’ experiences with a patient board for a clinical trial on urinary tract infections

Patient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research. While researchers who employed PPI mainly report on the positive aspects, in practice PP...

Authors: Imke Schilling, Heike Behrens, Jutta Bleidorn, Ildikó Gágyor, Claudia Hugenschmidt, Hannah Jilani, Guido Schmiemann and Ansgar Gerhardus

Move the north: evaluation of a regional stakeholder engagement initiative to support the development of a community-partnered physical activity research agenda

Although it is generally accepted that engaging with members of the public contributes to more actionable and relevant research, there are a limited number of reported evaluations of community engagement initi...

Authors: Chelsea Pelletier, Anne Pousette, Gloria Fox, Robin Keahey, Kirsten Ward, Guy Faulkner, Drona Rasali and Sandra Allison

Patients’ experience of communication and handling of symptomatic adverse events in breast cancer patients receiving adjuvant chemotherapy

The study is based on a national cluster randomized trial investigating the effect of electronic patient-reported outcomes (ePRO) on treatment outcomes in breast cancer patients receiving adjuvant chemotherapy...

Authors: Christina Witt Bæksted, Aase Nissen, Ann S. Knoop and Helle Pappot

PPI in research: a reflection from early stage researchers

The importance of patient and public involvement (PPI) in the design and conduct of health research projects is gaining widespread recognition; however, it is still a developing area. Furthermore, PPI in metho...

Authors: Alice M. Biggane, Maria Olsen and Paula R. Williamson

Combining qualitative research with PPI: reflections on using the person-based approach for developing behavioural interventions

The value and importance of qualitative research and Patient and Public Involvement (PPI) for developing complex health interventions is widely recognised. However, there is often confusion between the two, wi...

Authors: Ingrid Muller, Miriam Santer, Leanne Morrison, Kate Morton, Amanda Roberts, Cathy Rice, Marney Williams and Lucy Yardley

Patient participation in research funding: an overview of when, why and how amongst Dutch health funds

Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in thei...

Authors: Willemijn M. den Oudendammer, Jacquelien Noordhoek, Rebecca Y. Abma-Schouten, Lieke van Houtum, Jacqueline E. W. Broerse and Christine W. M. Dedding

Engaging children and families in pediatric Health Research: a scoping review

Patient engagement (PE) in pediatric health services research is challenging due to contextual factors such as busyness of parenting, work schedules, and diverse family structures. This scoping review seeks to...

Authors: Rachel Flynn, Sarah Walton and Shannon D. Scott

How helpful are Patient and Public Involvement strategic documents - Results of a framework analysis using 4Pi National Involvement Standards

Patient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for ...

Authors: Rachel Matthews, Meerat Kaur, Catherine French, Alison Baker and Julie Reed

Innovating public engagement and patient involvement through strategic collaboration and practice

Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually de...

Authors: Leah Holmes, Katharine Cresswell, Susannah Williams, Suzanne Parsons, Annie Keane, Cassie Wilson, Safina Islam, Olivia Joseph, Jahanara Miah, Emily Robinson and Bella Starling

Patient involvement in cardiovascular research: a qualitative impact evaluation

Involving patients in scientific research has been shown to improve the relevance of the research, as well as its quality and applicability. Harteraad, the Dutch patient organization for people with cardiovasc...

Authors: Eva Vroonland, Inge Schalkers, Daphne Bloemkolk and Christine Dedding