Articles

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

Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement

Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper mean...

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

Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement

Young people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to...

Authors: Rachel M. Taylor, Jeremy S. Whelan, Faith Gibson, Sue Morgan and Lorna A. Fern

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as p...

Authors: Danielle E. Rolfe, Vivian R. Ramsden, Davina Banner and Ian D. Graham

Regional working in the East of England: using the UK National Standards for Public Involvement

Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Inv...

Authors: Elspeth Mathie, Helena Wythe, Diane Munday, Graham Rhodes, Penny Vicary, Paul Millac and Julia Jones

“Still learning and evolving in our approaches”: patient and stakeholder engagement among Canadian community-based primary health care researchers

Increasingly, health researchers are conducting their research in partnership with non-researchers such as patients and caregivers, advocacy groups, clinicians, and policymakers. The idea behind this partnersh...

Authors: Claire Kendall, Michael Fitzgerald, Rachel Seoyeon Kang, Sabrina T. Wong, Alan Katz, Martin Fortin, Emilie Dionne, Kerry Kuluski, Mary Ann O’Brien, Jenny Ploeg, Lois Crowe and Clare Liddy

Assessing community (peer) researcher’s experiences with conducting spirometry and being engaged in the ‘Participatory Research in Ottawa: Management and Point-of-care for Tobacco-dependence’ (PROMPT) project

This article examines the overall experiences of community researchers in their involvement with the ‘PROMPT’ project for smoking cessation, which targeted community members who were homeless or at-risk for ho...

Authors: Catherine B. Charron, Alzahra Hudani, Tina Kaur, Tiffany Rose, Kelly Florence, Sadia Jama and Smita Pakhalé

Facing Shadows: working with young people to coproduce a short film about depression

IMPACT (Improving Mood with Psychoanalytic and Cognitive Therapies) is a multi-centre randomised controlled trial of three therapeutic interventions for the treatment of depression in young people. IMPACT- My ...

Authors: Valerie Dunn, Sally O’Keeffe, Emily Stapley and Nick Midgley

Fostering the conduct of ethical and equitable research practices: the imperative for integrated knowledge translation in research conducted by and with indigenous community members

Integrated knowledge translation is a research approach in which researchers work as partners with the people for whom the research is meant to be of use. A partnered approach can support the use of Indigenous...

Authors: Janet Jull, Melody Morton-Ninomiya, Irene Compton and Annie Picard

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study

Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best...

Authors: Jahanara Miah, Piers Dawes, Iracema Leroi, Suzanne Parsons and Bella Starling

Opportunities and challenges in public and community engagement: the connected for cognitive health in later life (CHILL) project

Two goals of public health research are to understand what causes disease and ill health, and what can be done to prevent it. To develop appropriate and effective actions, we need to know what resources are av...

Authors: Caroline Lee, Tom Mellor, Peggye Dilworth-Anderson, Tiffany Young, Carol Brayne and Louise Lafortune

Diversifying audiences and producers of public involvement in scientific research: the AudioLab

A partnership between a public engagement specialist, and a director of a digital radio station working towards social change, The AudioLab is a creative and innovative way to support diverse young people to c...

Authors: Bella Starling and Jemma Tanswell

Stakeholder involvement in health research priority setting in low income countries: the case of Zambia

While there is increasing recognition of the importance of stakeholder involvement in health research priority setting there is a paucity of literature reporting on stakeholder involvement in health research p...

Authors: Lydia Kapiriri

Reflections and experiences of a co-researcher involved in a renal research study

Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement...

Authors: Sue Marks, Elspeth Mathie, Jane Smiddy, Julia Jones and Maria da Silva-Gane

Overcoming barriers to the involvement of deafblind people in conversations about research: recommendations from individuals with Usher syndrome

Usher syndrome is the most common cause of deafblindness worldwide and is estimated to affect between 3 and 6 people in every 100,000. Children are born with hearing loss and develop sight loss in their early ...

Authors: Andrew Skilton, Emma Boswell, Kevin Prince, Priya Francome-Wood and Mariya Moosajee

Patient and public involvement mobile workshops – convenient involvement for the un-usual suspects

When planning a research project into patients’ experiences of online booking of GP appointments, we tried out a new way to get feedback from the public on our research ideas and design. As the research topic ...

Authors: Abi Eccles, Carol Bryce, Amadea Turk and Helen Atherton

Engaging knowledge users in development of the CONSORT-Equity 2017 reporting guideline: a qualitative study using in-depth interviews

Randomized controlled trials (“randomized trials”) can provide evidence to assess the equity impact of an intervention. Decision makers need to know about equity impacts of healthcare interventions so that peo...

Authors: Janet Jull, Mark Petticrew, Elizabeth Kristjansson, Manosila Yoganathan, Jennifer Petkovic, Peter Tugwell and Vivian Welch

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

The Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced ...

Authors: Lorraine J. Breault, Katherine Rittenbach, Kelly Hartle, Robbie Babins-Wagner, Catherine de Beaudrap, Yamile Jasaui, Emily Ardell, Scot E. Purdon, Ashton Michael, Ginger Sullivan, Aakai’naimsskai’piiaakii Sharon Ryder Unger, Lorin Vandall-Walker, Brad Necyk, Kiara Krawec, Elizabeth Manafò and Ping Mason-Lai

Meet the researchers: an alternative method of engaging patients with research in mesothelioma

There are new ways to engage people with science and research but many patient support groups and charitable organisations still hold traditional meetings to provide updates on their activities and to report n...

Authors: Kate Hill, Mags Portman and Zsuzsanna Tabi

Early career researchers’ perspectives and roles in patient-oriented research

Patient-oriented research (POR) has received increasing attention in recent years. In this approach, patients’ experiential knowledge, derived from their experiences of living with a condition or illness and o...

Authors: Geneviève Rouleau, Jean-Christophe Bélisle-Pipon, Stanislav Birko, Philippe Karazivan, Nicolas Fernandez, Karine Bilodeau, Yi-Sheng Chao, Alexandra de Pokomandy, Véronique Foley, Bruno Gagnon, Samantha Gontijo Guerra, Cynthia Khanji, Catherine Lamoureux-Lamarche, Bertrand Lebouché, Carlotta Lunghi, Matthew Menear…

Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team

Co-producing research with members of the public is increasingly recognised as a valuable process. Yet, despite these good intentions, the literature on coproduction has struggled to keep pace with the coprodu...

Authors: Tracey McConnell, Paul Best, Gavin Davidson, Tom McEneaney, Cherry Cantrell and Mark Tully

How to engage patients in research and quality improvement in community-based primary care settings: protocol for a participatory action research pilot study

Making primary care clinics more patient-centered is key to improving patients’ experience of care. If patients themselves were engaged in helping define priorities and suggesting quality improvements in the c...

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

Female genital mutilation in the UK- where are we, where do we go next? Involving communities in setting the research agenda

Female Genital Mutilation (FGM) is all practices involving cutting, alteration or injury to the female genitalia for non-medical reasons. It is a form of violence against women and children, with no benefits a...

Authors: S. Dixon, K. Agha, F. Ali, L. El-Hindi, B. Kelly, L. Locock, N. Otoo-Oyortey, S. Penny, E. Plugge and L. Hinton

Models and frameworks of patient engagement in health services research: a scoping review protocol

Patient engagement in research is an emerging approach that involves active and meaningful collaboration between researchers and patients throughout all phases of a project, including planning, data collection...

Authors: Anna Maria Chudyk, Celeste Waldman, Tara Horrill, Lisa Demczuk, Carolyn Shimmin, Roger Stoddard, Serena Hickes and Annette S. H. Schultz