Articles

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships

There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer’s disease and other dementias. Yet care for caregivers continues to be fragmented and f...

Authors: Carole L. White, Kristen J. Overbaugh, Carolyn E. Z. Pickering, Bridgett Piernik-Yoder, Debbie James, Darpan I. Patel, Frank Puga, Lark Ford and James Cleveland

Patient and public involvement in health literacy interventions: a mapping review

If people can read, understand and act on health information to better their health and reduce illness, they are thought to have “adequate” health literacy. Poor health literacy can mean people are less able t...

Authors: Stephanie Howard Wilsher, Julii Brainard, Yoon Loke and Charlotte Salter

Correction to: Understanding Plain English Summaries: A Comparison of two Approaches to Improve the Quality of Plain English Summaries in Research

After publication of our article [1] it has come to our attention that Fig. 3 was accidentally omitted. In the section “Ease of reading”, the sentence “FRE scores were recorded for the original, author-revised...

Authors: Emma Kirkpatrick, Wendy Gaisford, Elaine Williams, Elizabeth Brindley, Doreen Tembo and David Wright

Using a Community-Engaged Research (CEnR) approach to develop and pilot a photo grid method to gain insights into early child health and development in a socio-economic disadvantaged community

This paper reports on the use of a Community-Engaged Research (CEnR) approach to develop a new research tool to involve members of the community in thinking about priorities for early child health and developm...

Authors: Emma Lowrie and Rachel Tyrrell-Smith

Public involvement could usefully inform ethical review, but rarely does: what are the implications?

Researchers carrying out research in the NHS in England have to obtain approval for their study from an NHS Research Ethics Committee (REC). Involving the public in research helps to ensure studies are ethical...

Authors: Kristina Staley and Jim Elliott

Co-creation of a digital tool for the empowerment of parents of children with physical disabilities

Parents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for i...

Authors: M. W. Alsem, K. M. van Meeteren, M. Verhoef, M. J. W. M. Schmitz, M. J. Jongmans, J. M. A. Meily-Visser and M. Ketelaar

Using Participatory Learning & Action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: an analysis of stakeholders’ experiences

It is important for health care workers to know the needs and expectations of their patients. Therefore, service users have to be involved in research. To achieve a meaningful dialogue between service users, h...

Authors: T. de Brún, M. O’Reilly - de Brún, E. Van Weel-Baumgarten, N. Burns, C. Dowrick, C. Lionis, C. O’Donnell, F. S. Mair, M. Papadakaki, A. Saridaki, W. Spiegel, C. Van Weel, M. Van den Muijsenbergh and A. MacFarlane

Strength in Numbers: an international consensus conference to develop a novel approach to care delivery for young adults with type 1 diabetes, the D1 Now Study

Many young adults with type 1 diabetes struggle with the day-to-day management of their condition. They often find it difficult to find the time to attend their clinic appointments and to meet with their diabe...

Authors: M. C. O’Hara, L. Hynes, M. O’Donnell, C. Keighron, G. Allen, A. Caulfield, C. Duffy, M. Long, M. Mallon, M. Mullins, G. Tonra, M. Byrne and S. F. Dinneen

Abstracts from the NIHR INVOLVE Conference 2017

Authors: Delia Muir, Lidewij Eva Vat, Malori Keller, Tim Bell, Clara R. Jørgensen, Nanna B. Eskildsen, Anna T. Johnsen, Raksha Pandya-Wood, Steven Blackburn, Ruth Day, Carol Ingram, Julie Hapeshi, Samaira Khan, Delia Muir, Wendy Baird, Sue H. Pavitt…

Research Involvement and Engagement: reflections so far and future directions

Two years ago we launched Research Involvement and Engagement (RIE) as an interdisciplinary co-produced journal, focusing on patient and wider involvement and engagement in all stages of health and social care re...

Authors: Richard Stephens and Sophie Staniszewska

Forced migrants involved in setting the agenda and designing research to reduce impacts of complex emergencies: combining Swarm with patient and public involvement

The UK’s National Institute for Health Research (NIHR) Health Protection Research Unit in Emergency Preparedness and Response was asked to undertake research on how to reduce the impact of complex national/int...

Authors: Julii Suzanne Brainard, Enana Al Assaf, Judith Omasete, Steve Leach, Charlotte C. Hammer and Paul R. Hunter

Parents’ perceptions of reasons for excess weight loss in obese children: a peer researcher approach

This study reports on the process of conducting participatory research by training peer researchers to conduct interviews and analyse data collected with parents of overweight children. The methodology was cho...

Authors: Fiona Gillison, Geraldine Cooney, Valerie Woolhouse, Angie Davies, Fiona Dickens and Penny Marno

Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study

Many young adults with type 1 diabetes (T1D) find it hard to control their blood glucose levels. With lots of things going on in their lives, their diabetes is often not the most important thing to them. That ...

Authors: Mary Clare O’Hara, Áine Cunningham, Cameron Keighron, Gary Allen, Antony Caulfield, Ciara Duffy, Michelle Long, Madeleine Mallon, Monica Mullins, Garret Tonra, Sarah Simkin, Lisa Hynes, Máire O’Donnell, Molly Byrne and Sean F Dinneen

Understanding Plain English summaries. A comparison of two approaches to improve the quality of Plain English summaries in research reports

There is a need for the authors of research reports to be able to communicate their work clearly and effectively to readers who are not familiar with the research area. The National Institute for Health Resear...

Authors: Emma Kirkpatrick, Wendy Gaisford, Elaine Williams, Elizabeth Brindley, Doreen Tembo and David Wright

Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies

The 2011 standards for trustworthy development of healthcare guidelines published by the United States-based Institute of Medicine recommend that guideline developers involve patients and public representative...

Authors: Melissa J. Armstrong and Joshua A. Bloom

The impact of involvement on researchers: a learning experience

The impacts of involvement in research are often described in terms of the difference made to the research, the people involved and less frequently the researchers. This paper focuses on the researchers’ exper...

Authors: Kristina Staley, Isabelle Abbey-Vital and Claire Nolan

“Is all the stuff about neurons necessary?” The development of lay summaries to disseminate findings from the Newcastle Cognitive Function after Stroke (COGFAST) study

Why did we do this study?

Authors: Sarah Barnfield, Alison Clara Pitts, Raj Kalaria, Louise Allan and Ellen Tullo

Patient organization involvement and the challenge of securing access to treatments for rare diseases: report of a policy engagement workshop

Patients with rare diseases often help to develop new treatments for their conditions. But once developed, those treatments are sometimes priced too high for many patients to access them. We became aware that ...

Authors: Koichi Mikami and Steve Sturdy

Using the nominal group technique to involve young people in an evidence synthesis which explored ‘risk’ in inpatient mental healthcare

We conducted a review of research on the topic of ‘risk’ in hospital based mental health care for young people aged 11-18. We wanted to include a contribution from young people alongside other stakeholders wit...

Authors: Nicola Evans, Ben Hannigan, Steven Pryjmachuk, Elizabeth Gillen, Deborah Edwards, Mirella Longo, Gemma Trainor and Felicity Hathway

Recruiting patients as partners in health research: a qualitative descriptive study

Increasingly, funders and researchers want to partner with patients in health research, but it can be challenging for researchers to find patient partners. More than taking part in research as participants, pa...

Authors: Lidewij Eva Vat, Devonne Ryan and Holly Etchegary

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what...

Authors: S. Staniszewska, J. Brett, I. Simera, K. Seers, C. Mockford, S. Goodlad, D. G. Altman, D. Moher, R. Barber, S. Denegri, A. Entwistle, P. Littlejohns, C. Morris, R. Suleman, V. Thomas and C. Tysall

Tea, talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia

There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researcher...

Authors: Lamiece Hassan, Caroline Swarbrick, Caroline Sanders, Angela Parker, Matt Machin, Mary P. Tully and John Ainsworth

Involving seldom-heard groups in a PPI process to inform the design of a proposed trial on the use of probiotics to prevent preterm birth: a case study

When designing clinical trials it is important to involve members of the public, who can provide a view on what may encourage or prevent people participating and on what matters to them. This is known as Publi...

Authors: Juliet Rayment, Rosemary Lanlehin, Christine McCourt and Shahid M. Husain

The consultation of rugby players in co-developing a player health study: feasibility and consequences of sports participants as research partners

Many funding bodies within the United Kingdom and globally have encouraged public involvement in research. The Department of Health has also called public involvement a sign of good research. Despite the wide...

Authors: Madeleine A.M. Davies, Edward Balai, Jo Adams, John-Henry Carter, Andrew Judge, Julia L. Newton and Nigel K. Arden

Working with public contributors to improve the patient experience at the Manchester Clinical Research Facility: an evaluation of the Experience Based Design approach

The Experience Based Design (EBD) approach involves patients, staff and members of the public working together to improve a service. This paper evaluates the methods that are used to involve patients and membe...

Authors: Kerin Bayliss, Rebecca Prince, Hal Dewhurst, Suzanne Parsons, Leah Holmes and Paul Brown

Stakeholder involvement in systematic reviews: a protocol for a systematic review of methods, outcomes and effects

Researchers are expected to actively involve stakeholders (including patients, the public, health professionals, and others) in their research. Although researchers increasingly recognise that this is good pra...

Authors: Alex Pollock, Pauline Campbell, Caroline Struthers, Anneliese Synnot, Jack Nunn, Sophie Hill, Heather Goodare, Chris Watts and Richard Morley

Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme

Members of the public share their views with researchers to improve health and social care research. Lay assessing is one way of doing this. This is where people, drawing upon personal and general life experie...

Authors: Adele Horobin, George Brown, Fred Higton, Stevie Vanhegan, Andrew Wragg, Paula Wray and Dawn-Marie Walker

A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards

Researchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start research...

Authors: Raksha Pandya-Wood, Duncan S. Barron and Jim Elliott

“Hitting the spot”: Developing individuals with lived-experience of health and social care as facilitators to deliver a course to enhance public involvement in research – a Welsh perspective

Public involvement in research has become an important and integral part of the research process in health and social care, from the early stages of research prioritisation and development to the later stages ...

Authors: Alan Meudell, Sian Jones, Natalie Simon, Zoe Hunter, Barbara Moore, Jim Elliott and Dawn Casey

Priority setting in research: user led mental health research

Involving people in health research is increasingly recognised as being important to make sure that research is focused more on the needs of people who use health services. At present, ideas about what should ...

Authors: Marjorie Ghisoni, Christine Ann Wilson, Karen Morgan, Bethan Edwards, Natalie Simon, Emma Langley, Helen Rees, Amanda Wells, Philip John Tyson, Phil Thomas, Allen Meudell, Frank Kitt, Brian Mitchell, Alan Bowen and Jason Celia

Strengthening international patient advocacy perspectives on patient involvement in HTA within the HTAi Patient and Citizen Involvement Interest Group – Commentary

Health Technology Assessment (HTA) is an evidence-based decision-making process, focusing on evaluating health technologies for funding within a healthcare system. ‘Health technologies’ include medications, me...

Authors: Janet L. Wale, Anna Mae Scott, Neil Bertelsen and Nick Meade

Patient advocate perspectives on involvement in HTA: an international snapshot

A number of health technology assessment (HTA) organisations have developed processes to engage patients in the assessment of new health technologies such as pharmaceuticals, diagnostic tests, devices or medic...

Authors: Anna Mae Scott and Janet L. Wale

Learning to work together – lessons from a reflective analysis of a research project on public involvement

Patient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an importa...

Authors: A. Howe, E. Mathie, D. Munday, M. Cowe, C. Goodman, J. Keenan, S. Kendall, F. Poland, S. Staniszewska and P. Wilson

A systematic scoping review of the evidence for consumer involvement in organisations undertaking systematic reviews: focus on Cochrane

Cochrane is the largest international producer of systematic reviews of clinical trial evidence. We looked for published evidence that reports where consumers (patients and the public) have been involved in Co...

Authors: Richard F Morley, Gill Norman, Su Golder and Polly Griffith

Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: an explorative study to gain insights into perspectives on future research

Ultrasound examinations during pregnancy have led to an increased number of detected heart defects in fetuses. Pregnant women and their partners are often unprepared for these news, and experience several diff...

Authors: Tommy Carlsson, Ulla Melander Marttala, Barbro Wadensten, Gunnar Bergman and Elisabet Mattsson

Exploring the motivations of patients with type 2 diabetes to participate in clinical trials: a qualitative analysis

Certain patient groups are reluctant to engage with clinical research and consequently findings are not always truly representative of the wider population. With the emphasis on evidence-based clinical practic...

Authors: Stephanie Estcourt, Jill Epton, Tom Epton, Bijay Vaidya and Mark Daly

Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe

PLM is an online platform that provides tools for individuals to track their health and connect with other patients and while PLM has invited patients to participate in various research projects throughout the...

Authors: Meaghan Bradley, Julia Braverman, Magdalena Harrington and Paul Wicks

Patient and public involvement in Paediatric Intensive Care research: considerations, challenges and facilitating factors

Paediatric Intensive Care (PIC) provides care to extremely ill children. Research in this area can be difficult because children are often too sick to discuss being involved in a study and parents are too upse...

Authors: J. C. Menzies, K. P. Morris, H. P. Duncan and J. F. Marriott

Determining priorities for research to improve fundamental care on hospital wards

The aim of this project was to find out the priorities for research that could improve fundamental care. ‘Fundamental care’ covers all aspects of basic care in hospital wards, such as helping with core physica...

Authors: Jane Ball, Claire Ballinger, Anya De Iongh, Chiara Dall’Ora, Sally Crowe and Peter Griffiths

“Exploring knowledge-user experiences in integrated knowledge translation: a biomedical investigation of the causes and consequences of food allergy”

Food allergy is a serious public health problem in Canada and other high-income countries, as it is potentially life threatening and severely impacts the quality of life for individuals and their families. Yet...

Authors: Jenna Dixon, Susan J. Elliott and Ann E. Clarke

Keeping it credible in cohort multiple Randomised Controlled Trials: the Community Ageing Research 75+ (CARE 75+) study model of patient and public involvement and engagement

There are well documented benefits to involving patients and the public in research. However, there is little research published about their involvement in large complex studies such as cohort multiple Randomi...

Authors: Anne Heaven, Lesley Brown, Marilyn Foster and Andrew Clegg

Lay involvement in the analysis of qualitative data in health services research: a descriptive study

There is a consensus that patients and the public should be involved in research in a meaningful way. However, to date, lay people have been mostly involved in developing research ideas and commenting on patie...

Authors: S. Garfield, S. Jheeta, F. Husson, A. Jacklin, A. Bischler, C. Norton and B. D. Franklin

Power to the people: To what extent has public involvement in applied health research achieved this?

Public involvement is required for applied health research funded in the UK. One of the largest funders, the National Institute of Health Research (NIHR), makes it clear that it values the knowledge of patient...

Authors: Gill Green

Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design

For the elderly to get the care and services they need, they may need to make the difficult decision about staying in their home or moving to another home. Many other people may be involved in their care too (...

Authors: Mirjam M. Garvelink, Julie Emond, Matthew Menear, Nathalie Brière, Adriana Freitas, Laura Boland, Maria Margarita Becerra Perez, Louisa Blair, Dawn Stacey and France Légaré

Including patients in core outcome set development: issues to consider based on three workshops with around 100 international delegates

This commentary article describes three interactive workshops that explored how patients can contribute to decisions about what outcomes are measured in clinical trials across the world. Outcomes like quality ...

Authors: Bridget Young and Heather Bagley

What’s in a “research passport”? A collaborative autoethnography of institutional approvals in public involvement in research

The article analyses the process of securing permissions for members of the public (we refer to them as “research partners”) and academics involved in a qualitative study of public involvement in research (PIR...

Authors: Vito Laterza, David Evans, Rosemary Davies, Christine Donald and Cathy Rice

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy

The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a p...

Authors: Jayna Holroyd-Leduc, Joyce Resin, Lisa Ashley, Doris Barwich, Jacobi Elliott, Paul Huras, France Légaré, Megan Mahoney, Alies Maybee, Heather McNeil, Daryl Pullman, Richard Sawatzky, Paul Stolee and John Muscedere

Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People’s Opinions Underpinning Rheumatology Research - YOURR project)

Involving young people in research about their health is increasingly recognized as being important to make sure that research is focused more on the needs of young people. However, at present, ideas about wha...

Authors: Suzanne Parsons, Kate Dack, Bella Starling, Wendy Thomson and Janet E. McDonagh

Patients’ perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH Common Drug Review

In Canada, the CADTH Common Drug Review helps ensure that scarce health care resources are used to fund the most effective drugs. Clinicians, researchers, payers, and patients all have important, but potential...

Authors: Sarah Berglas, Lauren Jutai, Gail MacKean and Laura Weeks

The Ottawa Citizen Engagement and Action Model (OCEAM): A Citizen engagement Strategy Operationalized Through The Participatory Research in Ottawa, Management and Point-of-care of Tobacco (PROMPT) Study

The PROMPT study is a community-based research project designed to understand the factors which affect smoking as well as ways to manage, reduce and quit smoking among people who use drugs in Ottawa. There is ...

Authors: Smita Pakhale, Tina Kaur, Kelly Florence, Tiffany Rose, Robert Boyd, Joanne Haddad, Donna Pettey, Wendy Muckle and Mark Tyndall