Articles

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

Developing resources to facilitate culturally-sensitive service planning and delivery – doing research inclusively with people with learning disabilities

(Please see www.​Toolsfortalking.​co.​uk for an easy read summary of the project.)

Authors: Gemma Unwin, Michael Larkin, John Rose, Biza Stenfert Kroese and Stephen Malcolm

Patient and public involvement in patient safety research: a workshop to review patient information, minimise psychological risk and inform research

Patient safety is a growing research area. However, although patients and the public are increasingly involved in clinical research, there is little guidance on how best to involve patients in patient safety r...

Authors: Dominic Furniss, Ioanna Iacovides, Imogen Lyons, Ann Blandford and Bryony Dean Franklin

Patient involvement in a qualitative meta-synthesis: lessons learnt

Patients and researchers must work together to improve the relevance and quality of research. Qualitative systematic reviews synthesise findings from a range of published qualitative studies to identify common...

Authors: Kerin Bayliss, Bella Starling, Karim Raza, Eva C. Johansson, Codruta Zabalan, Susan Moore, Diana Skingle, Tiina Jasinski, Susan Thomas and Rebecca Stack

Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers

In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical...

Authors: Anne McKenzie, Kirsten Alpers, Jane Heyworth, Cindy Phuong and Bec Hanley

A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress

Funders of research are increasingly requiring researchers to involve patients and the public in their research. Patient and public involvement (PPI) in research can potentially help researchers make sure that...

Authors: Heather J. Bagley, Hannah Short, Nicola L. Harman, Helen R. Hickey, Carrol L. Gamble, Kerry Woolfall, Bridget Young and Paula R. Williamson

Prioritising target behaviours for research in diabetes: Using the nominal group technique to achieve consensus from key stakeholders

The behaviour of people with diabetes (e.g. taking medication) and the behaviour of doctors and other healthcare professionals (e.g. checking patients’ blood sugar) are important. Our research group wanted to ...

Authors: Jennifer Mc Sharry, Milou Fredrix, Lisa Hynes and Molly Byrne

Going the extra mile – creating a co-operative model for supporting patient and public involvement in research

In 2014, the Chief Medical Officer and Director General of Research and Development commissioned a review of patient and public involvement in the National Institute for Health Research. The report on this rev...

Authors: Adele Horobin

Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership

The James Lind Alliance (JLA) brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise shared uncertainties about the effects of treatment. The JLA eme...

Authors: Mary Madden and Richard Morley

Evaluating public involvement in research design and grant development: Using a qualitative document analysis method to analyse an award scheme for researchers

The National Institute for Health Research (NIHR) Research Design Service (RDS) for Yorkshire and Humber has been running a public involvement funding scheme since 2008. This scheme awards researchers a small ...

Authors: Susan Baxter, Delia Muir, Louise Brereton, Christine Allmark, Rosemary Barber, Lydia Harris, Brian Hodges, Samaira Khan and Wendy Baird

Development of an online clinical trial recruitment portal for the NIHR mental health BRC

In order to test whether or not new treatments for mental health disorders help patients get better according to clinician/patient selected criteria, it is often necessary to test them on patients under safe, ...

Authors: Sarah Markham

Combining PPI with qualitative research to engage ‘harder-to-reach’ populations: service user groups as co-applicants on a platform study for a trial

It is recommended that research studies are carried out with or by patients and the public through their involvement from the beginning and in as many stages as possible (known as PPI). Some studies formally i...

Authors: Heather Morgan, Gill Thomson, Nicola Crossland, Fiona Dykes and Pat Hoddinott

It’s not evidence, it’s insight: bringing patients’ perspectives into health technology appraisal at NICE

Health technology appraisal involves reviewing the findings from clinical trials and economic data to produce guidance on how health technology should be used. This task is carried out by appraisal committees ...

Authors: Kristina Staley and Caroline Doherty

Patient-reported quality indicators for osteoarthritis: a patient and public generated self-report measure for primary care

People with osteoarthritis desire high quality care, support and information. However, the quality of care for people with OA in general practice is not routinely collected. Quality Indicators can be used to b...

Authors: Steven Blackburn, Adele Higginbottom, Robert Taylor, Jo Bird, Nina Østerås, Kåre Birger Hagen, John J. Edwards, Kelvin P. Jordan, Clare Jinks and Krysia Dziedzic

Engaging older adults in healthcare research and planning: a realist synthesis

The importance of citizen involvement in healthcare research and planning has been widely recognized. There is however, a lack of understanding of how best to engage older adults, Canada's fastest growing segm...

Authors: Heather McNeil, Jacobi Elliott, Kelsey Huson, Jessica Ashbourne, George Heckman, Jennifer Walker and Paul Stolee

A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges

In the United Kingdom (UK), official bodies such as the Department of Health and research funders such as the National Institute for Health Research support and encourage lay involvement in all stages of resea...

Authors: Carole Mockford, Matt Murray, Kate Seers, Jan Oyebode, Richard Grant, Sue Boex, Sophie Staniszewska, Yvonne Diment, Jim Leach, Uma Sharma, Rosemary Clarke and Rashida Suleman

The patient voice in research—evolution of a role

Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to w...

Authors: Dianne S. Johnson, Mary T. Bush, Susan Brandzel and Karen J. Wernli

Thanks to all those who reviewed for Research Involvement and Engagement in 2015

A peer-reviewed journal would not survive without the generous time and insightful comments of the reviewers, whose efforts often go unrecognized. Although final decisions are always editorial, they are greatl...

Authors: Richard Stephens and Sophie Staniszewska

Older people’s priorities in health and social care research and practice: a public engagement workshop

A one day public engagement workshop was held to focus on the priorities of older people about research and practice in health and social care. Seventy-five older people from the general public and a variety o...

Authors: Dalal Alsaeed, Nathan Davies, Julia Fiona-Maree Gilmartin, Elizabeth Jamieson, Kalpa Kharicha, Ann E. M. Liljas, Bahijja Tolulope Raimi-Abraham, Janine Aldridge, Felicity J. Smith, Kate Walters and Mine Orlu Gul

Patient and public involvement in primary care research - an example of ensuring its sustainability

The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can pl...

Authors: Clare Jinks, Pam Carter, Carol Rhodes, Robert Taylor, Roger Beech, Krysia Dziedzic, Steven Blackburn, Rhian Hughes and Bie Nio Ong

Erratum to: Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch

Authors: Sally Crowe, Mark Fenton, Matthew Hall, Katherine Cowan and Iain Chalmers

More than just ticking a box…how patient and public involvement improved the research design and funding application for a project to evaluate a cycling intervention for hip osteoarthritis

Involving patients and the public in research helps to ensure that research remains relevant, and has an impact on the people it aims to benefit. Funding bodies now require patients and the public to be involv...

Authors: Lisa M. Andrews, Helen Allen, Zoë A. Sheppard, Guy Baylis and Thomas W. Wainwright

Erratum to: From tokenism to meaningful engagement: best practices in patient involvement in an EU project

Authors: David Supple, Amanda Roberts, Val Hudson, Sarah Masefield, Neil Fitch, Malayka Rahman, Breda Flood, Willem de Boer, Pippa Powell and Scott Wagers

Consulting patients in setting priorities in Myalgic Encephalomyelitis (M.E.) research: findings from a national on-line survey

Myalgic encephalitis (M.E.) is a common condition, the cause of which is not known and there are no treatments available. In this study the national patient support group Action for M.E. sought the opinions of...

Authors: Nicola Childs, Lisa Robinson, Sonya Chowdhury, Clare Ogden and Julia L. Newton

Exploring the impact of providing evidence-based medicine training to service users

Within health services research in the UK, there has been growing interest in evidence-based medicine (EBM) and patient and public involvement (PPI) in research. These two movements have a common goal of impro...

Authors: Andy Gibson, Kate Boddy, Kath Maguire and Nicky Britten

Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an ‘inclusive’ research approach

Public health research sometimes uses members of communities as researchers. These are called Community Researchers. The advantage of using Community Researchers is that it enables people who live in communiti...

Authors: Sarah Salway, Punita Chowbey, Elizabeth Such and Beverly Ferguson

Patient and public involvement in data collection for health services research: a descriptive study

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

Authors: Sara Garfield, Seetal Jheeta, Ann Jacklin, Anna Bischler, Christine Norton and Bryony D. Franklin

Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting

Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped ...

Authors: R. Snow, J C Crocker and S. Crowe

‘Is it worth doing?’ Measuring the impact of patient and public involvement in research

Much of the current debate around the impact of patient/public involvement on research focuses on the lack of empirical data. While a number of systematic literature reviews have reported the various ways in w...

Authors: Kristina Staley

From tokenism to meaningful engagement: best practices in patient involvement in an EU project

This commentary talks about patient involvement in one of the biggest EU projects to date—U-BIOPRED. It describes how people and carers of people with asthma have been able to develop and drive their input and...

Authors: David Supple, Amanda Roberts, Val Hudson, Sarah Masefield, Neil Fitch, Malayka Rahmen, Breda Flood, Willem de Boer, Pippa Powell and Scott Wagers

Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch

There is some evidence that there is a mismatch between what patients and health professionals want to see researched and the research that is actually done. The James Lind Alliance (JLA) research Priority Set...

Authors: Sally Crowe, Mark Fenton, Matthew Hall, Katherine Cowan and Iain Chalmers

One small step…

This editorial introduces the new, online, open-access journal Research Involvement and Engagement. The journal considers manuscripts on any aspect of the engagement or involvement of patients, carers or members ...

Authors: Richard Stephens and Sophie Staniszewska