Articles

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

Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such r...

Authors: Leah K. Crockett, Carolyn Shimmin, Kristy D. M. Wittmeier and Kathryn M. Sibley

Comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement

Some previous researchers (Locock et al) have written about what may be the best way for public contributors to be involved in data analysis in research projects. Their experience has been that giving public c...

Authors: Marney Williams, Mike Etkind, Fran Husson, Della Ogunleye and John Norton

Response to “comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement

Authors: Louise Locock, Susan Kirkpatrick, Lucy Brading, Gordon Sturmey, Jocelyn Cornwell, Neil Churchill and Glenn Robert

Evaluating the acceptability of a co-produced and co-delivered mental health public engagement festival: Mental Health Matters, Jakarta, Indonesia

Public engagement events are an important early strategy in developing a meaningful research agenda, which is more impactful and beneficial to the population. Evidence indicates the potential of such activitie...

Authors: Helen Brooks, Irmansyah Irmansyah, Herni Susanti, Bagus Utomo, Benny Prawira, Livia Iskandar, Erminia Colucci, Budi-Anna Keliat, Karen James, Penny Bee, Vicky Bell and Karina Lovell

Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis

Cystic fibrosis (CF) is the commonest life-limiting inherited disorder in the UK. It affects many parts of the body including the lungs and gut leading to increased infection and problems digesting food. Peopl...

Authors: N. J. Rowbotham, S. J. Smith, Z. C. Elliott, P. A. Leighton, O. C. Rayner, R. Morley and A. R. Smyth

Patient and public involvement in designing and conducting doctoral research: the whys and the hows

Evidence shows that public and patient involvement in research has a positive effect on its quality and end-results. Thus, public and patient involvement in all stages of research is becoming commonplace. Ther...

Authors: Justine Tomlinson, Kristina Medlinskiene, V-Lin Cheong, Sarah Khan and Beth Fylan

Reflections on qualitative data analysis training for PPI partners and its implementation into practice

Service users should be involved in every part of the research process, including analysis of qualitative research data such as interviews and focus groups. To enhance their participation, confidence and contr...

Authors: Alison Cowley, Margaret Kerr, Janet Darby and Pip Logan

Effective involvement: a report on the evaluation of a research awareness training package for public involvement in health research

As the role of Patient and Public Involvement contributors expands to all stages of the research cycle, there is increasing demand for training that meets the needs of this diverse population. To help meet thi...

Authors: Catherine Richardson, Ilyas Akhtar, Christine Smith, Amanda Edmondson, Alison Morris, Janet Hargreaves, Christine Rhodes and Jo Taylor

The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area

Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of ...

Authors: Amelia Jewell, Megan Pritchard, Katherine Barrett, Patrick Green, Sarah Markham, Sharon McKenzie, Roger Oliver, Maria Wan, Johnny Downs and Robert Stewart

Co-producing a shared understanding and definition of empowerment with people with dementia

Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a...

Authors: Tracey McConnell, Tristan Sturm, Mabel Stevenson, Noleen McCorry, Michael Donnelly, Brian J. Taylor and Paul Best

Facilitating non-tokenistic user involvement in research

With the increase in user activism in the Western societies in recent years, there has also been an increase in promoting user involvement in research. Hence, is necessary to address the danger of tokenism, a ...

Authors: Grace Inga Romsland, Kate Louise Milosavljevic and Tone Alm Andreassen

Recruitment of caregivers into health services research: lessons from a user-centred design study

With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challe...

Authors: Myles Leslie, Akram Khayatzadeh-Mahani and Gail MacKean

Supported and valued? A survey of early career researchers’ experiences and perceptions of youth and adult involvement in mental health, self-harm and suicide research

Patient and public involvement (PPI) in mental health research, including self-harm and suicide research, is desirable (as with other health topics) but may involve specific challenges given the perceived sens...

Authors: Ruth Wadman, A. Jess Williams, Katherine Brown and Emma Nielsen

Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections

Patients should be involved in the design, conduct and dissemination of research that affects them. Patient involvement leads to empowerment and enhances the quality of research. Differing motives and expectat...

Authors: Imke Schilling, Heike Behrens, Claudia Hugenschmidt, Jennifer Liedtke, Guido Schmiemann and Ansgar Gerhardus

Learning as an outcome of involvement in research: what are the implications for practice, reporting and evaluation?

Public involvement in research has evolved over the last two decades in a culture dominated by the principles of evidence-based medicine. It is therefore unsurprising that some researchers have applied the sam...

Authors: Kristina Staley and Duncan Barron

‘A group of totally awesome people who do stuff’ - a qualitative descriptive study of a children and young people’s patient and public involvement endeavour

In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children’s Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). I...

Authors: Faye Forsyth, Caroline Saunders, Anne Elmer and Shirlene Badger

Correction to: Exploring experiences of people participation activities in a British national health service trust: a service user-led research project

In the publication of this article [1] there is an error in the Results section in the sub-section ‘Better financial incentives and less bureaucracy’.

Authors: Adrian Curwen, Jane Fernandes, Rachael Howison, Paul Binfield, Frank Rohricht and Domenico Giacco

Hearing the voices of older adult patients: processes and findings to inform health services research

Whilst Patient and Public Involvement and Engagement (PPIE) are widely regarded as critical to developing clinical research, there is a perception that older adults may not be able to contribute and there is l...

Authors: Sally Fowler Davis, Anne Silvester, Deborah Barnett, Lisa Farndon and Mubarak Ismail

‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research

For patients and the public to work collaboratively with researchers, they need support and opportunities to engage in learning that builds on their skills and grows their confidence. In this article, we argue...

Authors: Kristina Staley, Emma Cockcroft, Andrea Shelly and Kristin Liabo

The development and user evaluation of health behaviour change resources for teenage and young adult Cancer survivors

This paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership wit...

Authors: Gemma Pugh, R. Hough, H. Gravestock, C. Davies, R. Horder and A. Fisher

Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?

There have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to poor patient ...

Authors: Davina Banner, Marc Bains, Sandra Carroll, Damanpreet K Kandola, Danielle E Rolfe, Caroline Wong and Ian D. Graham

Co-building a patient-oriented research curriculum in Canada

Foundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of...

Authors: Tim Bell, Lidewij Eva Vat, Colleen McGavin, Malori Keller, Leah Getchell, Anna Rychtera and Nicolas Fernandez

The James Lind Initiative: books, websites and databases to promote critical thinking about treatment claims, 2003 to 2018

The James Lind Initiative (JLI) was a work programme inaugurated by Iain Chalmers and Patricia Atkinson to press for better research for better health care. It ran between 2003 and 2018, when Iain Chalmers ret...

Authors: Iain Chalmers, Patricia Atkinson, Douglas Badenoch, Paul Glasziou, Astrid Austvoll-Dahlgren, Andy Oxman and Mike Clarke

Parents and clinicians: partners in perinatal bereavement research –experiences from the International Stillbirth Alliance Conference 2017

In recent years, there has been a global call to reduce the numbers of preventable stillbirths and increase public awareness about the incidence and impact of pregnancy loss. The lived experiences of bereaved ...

Authors: Rachel Rice, Daniel Nuzum, Orla O’Connell and Keelin O’Donoghue

Exploring experiences of people participation activities in a British national health service trust: a service user-led research project

People participation teams are being established in many British NHS Trusts. They support active service user involvement in staff recruitment interviews, in evaluations of care and in programmes to improve se...

Authors: Adrian Curwen, Jane Fernandes, Rachael Howison, Paul Binfield, Frank Rohricht and Domenico Giacco

A lung cancer research agenda that reflects the diverse perspectives of community stakeholders: process and outcomes of the SEED method

There is a need for methods that engage lay people and other stakeholders, such as patients and healthcare providers, in developing research questions about health issues important to them and their communitie...

Authors: Carlin L. Rafie, Emily B. Zimmerman, Dawn E. Moser, Sarah Cook and Fatemeh Zarghami

Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions

Background: Society has to cope with a large burden of health issues. There is need to find solutions to prevent diseases and help individuals live healthier lifestyles. Individual needs and circumstances vary gr...

Authors: Calum F. Leask, Marlene Sandlund, Dawn A. Skelton, Teatske M. Altenburg, Greet Cardon, Mai J. M. Chinapaw, Ilse De Bourdeaudhuij, Maite Verloigne and Sebastien F. M. Chastin