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  1. 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

    Citation: Research Involvement and Engagement 2017 3:14

    Content type: Commentary

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  2. 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

    Citation: Research Involvement and Engagement 2017 3:16

    Content type: Research article

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  4. 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

    Citation: Research Involvement and Engagement 2017 3:13

    Content type: Methodology

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  5. 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

    Citation: Research Involvement and Engagement 2017 3:12

    Content type: Research article

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  6. 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

    Citation: Research Involvement and Engagement 2017 3:11

    Content type: Research article

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  7. 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

    Citation: Research Involvement and Engagement 2017 3:8

    Content type: Research article

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  8. 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

    Citation: Research Involvement and Engagement 2017 3:10

    Content type: Research article

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  9. 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

    Citation: Research Involvement and Engagement 2017 3:9

    Content type: Protocol

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  10. 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

    Citation: Research Involvement and Engagement 2017 3:7

    Content type: Research article

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  11. 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

    Citation: Research Involvement and Engagement 2017 3:6

    Content type: Commentary

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  12. 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

    Citation: Research Involvement and Engagement 2017 3:5

    Content type: Commentary

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  13. 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

    Citation: Research Involvement and Engagement 2017 3:4

    Content type: Research article

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  14. 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

    Citation: Research Involvement and Engagement 2017 3:3

    Content type: Commentary

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  16. 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

    Citation: Research Involvement and Engagement 2017 3:1

    Content type: Research article

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  17. 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

    Citation: Research Involvement and Engagement 2016 2:36

    Content type: Research article

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  18. 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

    Citation: Research Involvement and Engagement 2016 2:35

    Content type: Research article

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  19. 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

    Citation: Research Involvement and Engagement 2016 2:34

    Content type: Research article

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  20. 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

    Citation: Research Involvement and Engagement 2016 2:33

    Content type: Research article

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  21. 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

    Citation: Research Involvement and Engagement 2016 2:32

    Content type: Review article

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  22. 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

    Citation: Research Involvement and Engagement 2016 2:31

    Content type: Methodology

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  23. 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

    Citation: Research Involvement and Engagement 2016 2:27

    Content type: Research article

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  24. 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

    Citation: Research Involvement and Engagement 2016 2:30

    Content type: Methodology

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  25. 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

    Citation: Research Involvement and Engagement 2016 2:29

    Content type: Research article

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  27. 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

    Citation: Research Involvement and Engagement 2016 2:26

    Content type: Research article

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  28. 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

    Citation: Research Involvement and Engagement 2016 2:25

    Content type: Commentary

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  29. 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

    Citation: Research Involvement and Engagement 2016 2:24

    Content type: Research article

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  30. 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

    Citation: Research Involvement and Engagement 2016 2:23

    Content type: Review article

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  31. 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

    Citation: Research Involvement and Engagement 2016 2:22

    Content type: Protocol

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  32. 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

    Citation: Research Involvement and Engagement 2016 2:21

    Content type: Research article

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  33. 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

    Citation: Research Involvement and Engagement 2016 2:20

    Content type: Protocol

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  35. 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

    Citation: Research Involvement and Engagement 2016 2:19

    Content type: Research article

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  36. 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

    Citation: Research Involvement and Engagement 2016 2:18

    Content type: Research article

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  37. 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

    Citation: Research Involvement and Engagement 2016 2:16

    Content type: Research article

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  38. 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

    Citation: Research Involvement and Engagement 2016 2:15

    Content type: Research article

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  39. 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

    Citation: Research Involvement and Engagement 2016 2:14

    Content type: Research article

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  41. 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

    Citation: Research Involvement and Engagement 2016 2:12

    Content type: Research article

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  42. 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

    Citation: Research Involvement and Engagement 2016 2:13

    Content type: Research article

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  44. 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

    Citation: Research Involvement and Engagement 2016 2:7

    Content type: Methodology

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  45. 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

    Citation: Research Involvement and Engagement 2016 2:4

    Content type: Research article

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  46. 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

    Citation: Research Involvement and Engagement 2016 2:5

    Content type: Research article

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  47. 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

    Citation: Research Involvement and Engagement 2016 2:10

    Content type: Review article

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  48. 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

    Citation: Research Involvement and Engagement 2016 2:8

    Content type: Research article

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  49. 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

    Citation: Research Involvement and Engagement 2016 2:6

    Content type: Commentary

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Research Involvement and Engagement

ISSN: 2056-7529

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