Articles

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

Developing the infrastructure for patient review in academic journals

Peer review is a well-established part of academic publishing. Its function is to assess the quality of a manuscript before publication in a journal. Research involvement and Engagement is the world’s first co-pr...

Authors: Sophie Staniszewska, Richard Stephens and Ella Flemyng

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

Development of a standard form for assessing research grant applications from the perspective of patients

Health-research funding organizations are increasingly involving patient representatives in the assessment of grant applications. However, there is no consensus on an appropriate scope or definition of the pat...

Authors: Maarten de Wit, Truus Teunissen, Lieke van Houtum and Margriet Weide

User involvement in a Danish project on the empowerment of cancer patients – experiences and early recommendations for further practice

This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up ...

Authors: Clara R. Jørgensen, Nanna B. Eskildsen and Anna T. Johnsen

Patient involvement in the development of a psychosocial cancer rehabilitation intervention: evaluation of a shared working group with patients and researchers

The aim of this paper is to present our experiences from a shared working group (SWG) with patient representatives and researchers. The SWG collaborated on developing a psychosocial cancer rehabilitation inter...

Authors: Eva Rames Nissen, Vibeke Bregnballe, Mimi Yung Mehlsen, Anne Kathrine Østerby Muldbjerg, Maja O’Connor and Kirsten Elisabeth Lomborg

Moving patient-oriented research forward: thoughts from the next generation of knowledge translation researchers

As knowledge translation trainee participants, we report on the discussions that took place during the 2017 Knowledge Translation Canada Summer Institute. The theme of the institute was patient-oriented resear...

Authors: Andrea C. Bishop, Meghan J. Elliott and Christine Cassidy

Taking patient reported outcomes centre stage in cancer research – why has it taken so long?

Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using str...

Authors: Peter Selby and Galina Velikova

Patient advocate involvement in the design and conduct of breast cancer clinical trials requiring the collection of multiple biopsies

Breast cancer is a diverse and varied disease. Recent research has shown that the collection of multiple biopsies before surgery can help researchers determine how the cancer is responding to treatment and can...

Authors: Leona M. Batten, Indrani Subarna Bhattacharya, Laura Moretti, Joanne S. Haviland, Marie A. Emson, Sarah E. Miller, Monica Jefford, Mairead MacKenzie, Maggie Wilcox, Marie Hyslop, Rachel Todd, Claire F. Snowdon and Judith M. Bliss

Inverting the patient involvement paradigm: defining patient led research

Patients usually understand their disease and lifestyle needs better than many medical professionals. They also have important ideas about what research would be most beneficial to their lives, especially on h...

Authors: Laura B. Mader, Tess Harris, Sabine Kläger, Ian B. Wilkinson and Thomas F. Hiemstra

Using qualitative research perspectives to inform patient engagement in research

In Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond...

Authors: Michelle Phoenix, Tram Nguyen, Stephen J. Gentles, Sandra VanderKaay, Andrea Cross and Linda Nguyen

Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research

Patient engagement is an opportunity for people with experience of a health-related issue to contribute to research on that issue. The Canadian Strategy for Patient-Oriented Research (SPOR) highlights patient ...

Authors: Nicole Doria, Brian Condran, Leah Boulos, Donna G. Curtis Maillet, Laura Dowling and Adrian Levy

Using patient and public involvement to improve the research design and funding application for a project aimed at fostering a more collaborative approach to the NHS health check: the CaVIAR project (better Care Via Improved Access to Records)

Following an initial NHS Health Check appointment, the National Institute for Health and Care Excellence (NICE) suggest patients with QRISK2 scores of ≥10% should be offered advice on lifestyle and the risks a...

Authors: Brian McMillan, Sarah Fox, Moira Lyons, Suzy Bourke, Manoj Mistry, Angela Ruddock, Benjamin Brown, Mei Yee Tang and Harm Van Marwijk

The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these servic...

Authors: Steven Blackburn, Sarah McLachlan, Sue Jowett, Philip Kinghorn, Paramjit Gill, Adele Higginbottom, Carol Rhodes, Fiona Stevenson and Clare Jinks

The prevalence of patient engagement in published trials: a systematic review

With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding pa...

Authors: Dean Fergusson, Zarah Monfaredi, Kusala Pussegoda, Chantelle Garritty, Anne Lyddiatt, Beverley Shea, Lisa Duffett, Mona Ghannad, Joshua Montroy, M. Hassan Murad, Misty Pratt, Tamara Rader, Risa Shorr and Fatemeh Yazdi

Reporting and appraising the context, process and impact of PPI on contributors, researchers and the trial during a randomised controlled trial - the 3D study

Including patient and public involvement (PPI) in health research is thought to improve research but it is hard to be clear exactly how it helps. This is because PPI takes many forms, is sometimes only token a...

Authors: Cindy Mann, Simon Chilcott, Katrina Plumb, Edmund Brooks and Mei-See Man

Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research

Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities....

Authors: Lisa Jane Brighton, Sophie Pask, Hamid Benalia, Sylvia Bailey, Marion Sumerfield, Jana Witt, Susanne de Wolf-Linder, Simon Noah Etkind, Fliss E. M. Murtagh, Jonathan Koffman and Catherine J. Evans

What does patient engagement mean for Canadian National Transplant Research Program Researchers?

In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and...

Authors: Julie Allard, Fabián Ballesteros, Samantha J. Anthony, Vincent Dumez, David Hartell, Greg Knoll, Linda Wright and Marie-Chantal Fortin

Enhancing the incorporation of the patient’s voice in drug development and evaluation

People living with a condition are uniquely positioned to inform the understanding of the therapeutic context for drug development and evaluation. In 2012, the U.S. Food and Drug Administration (FDA) establish...

Authors: Meghana Chalasani, Pujita Vaidya and Theresa Mullin

Service user reflections on the impact of involvement in research

Public involvement can impact on research, on the public who give advice, on the researchers and the research participants. Evaluating impact is an important part of the research process. Two members of a hosp...

Authors: Jim Gordon, Sue Franklin and Sabrina A. Eltringham

Advancing patient engagement: youth and family participation in health research communities of practice

The involvement of patients in health research has resulted in the development of more effective interventions and policies in healthcare that respond to the needs of healthcare users. This article examines ho...

Authors: Roberta L. Woodgate, Melanie Zurba and Pauline Tennent

Defining and evaluating novel procedures for involving patients in Core Outcome Set research: creating a meaningful long list of candidate outcome domains

Outcome domains are aspects of a condition that matter to patients and clinicians and can be measured to assess treatment effects. For tinnitus, examples include ‘tinnitus loudness’ and ‘ability to concentrate...

Authors: Harriet Smith, Adele Horobin, Kathryn Fackrell, Veronica Colley, Brian Thacker and Deborah A. Hall

Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol

Tailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.

Authors: Janet Jull, Maegan Mazereeuw, Amanada Sheppard, Alethea Kewayosh, Richard Steiner and Ian D. Graham

Patient led PROMs must take centre stage in cancer research

Patient involvement in research is about adding value rather than commenting on technical quality. After 15 years as an involved patient in cancer research I started looking around and I found I was asking mys...

Authors: Roger Wilson

Correction to: Abstracts from the NIHR INVOLVE Conference 2017

After publication of this supplement [1], it was brought to our attention that errors were apparent in the following abstracts and are included in this correction.

Authors: Elspeth Mathie, Helena Wythe, Diane Munday, Paul Millac, Graham Rhodes, Nick Roberts, Jean Simpson, Nat Barden, Penny Vicary, Amander Wellings, Fiona Poland and Julia Jones

Patient and public involvement in reducing health and care research waste

As much as 85 % of health research is believed to be wasted because it is not published or reported, the design is poor or does not consider what is already known in the topic area. Although a great deal of wo...

Authors: Virginia Minogue, Mary Cooke, Anne-Laure Donskoy, Penny Vicary and Bill Wells

A method for co-creation of an evidence-based patient workbook to address alcohol use when quitting smoking in primary care: a case study

The purpose of this paper is to describe a patient engagement event designed to create an educational workbook with smokers who drink alcohol at harmful levels. The goal was to create a workbook that combined ...

Authors: Nadia Minian, Aliya Noormohamed, Laurie Zawertailo, Dolly Baliunas, Norman Giesbrecht, Bernard Le Foll, Jürgen Rehm, Andriy Samokhvalov and Peter L. Selby

Finding and engaging patients and the public to work collaboratively on an acute infection microbiology research public panel

In 2015 a microbiology team in Bristol joined a European research project that aims to develop new antibiotics to fight drug resistant infections. The microbiology team were convinced of the benefits of patien...

Authors: Sally Grier, David Evans, Andy Gibson, Teh Li Chin, Margaret Stoddart, Michele Kok, Richard Campbell, Val Kenny and Alasdair MacGowan

Establishing research priorities relating to the long-term impact of TIA and minor stroke through stakeholder-centred consensus

What is the problem and why is this important?

Authors: Grace M. Turner, Ruth Backman, Christel McMullan, Jonathan Mathers, Tom Marshall and Melanie Calvert

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

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

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

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