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  1. Content type: Methodology

    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

    Citation: Research Involvement and Engagement 2019 5:24

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  2. Content type: Review article

    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

    Citation: Research Involvement and Engagement 2019 5:23

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  3. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2019 5:22

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  4. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:21

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  5. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:20

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  6. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:19

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  7. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:18

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  8. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:17

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  9. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:16

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  10. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:15

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  11. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2019 5:14

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  12. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:13

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  13. Content type: Correction

    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

    Citation: Research Involvement and Engagement 2019 5:12

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    The original article was published in Research Involvement and Engagement 2019 5:5

  14. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:11

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  15. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2019 5:10

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  16. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:9

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  17. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2019 5:8

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  18. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:7

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  19. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2019 5:6

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  20. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2019 5:4

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  21. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:5

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    The Correction to this article has been published in Research Involvement and Engagement 2019 5:12

  22. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2019 5:3

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  23. Content type: Methodology

    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

    Citation: Research Involvement and Engagement 2019 5:2

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  24. Content type: Methodology

    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

    Citation: Research Involvement and Engagement 2019 5:1

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    A Letter has been published.

  25. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:50

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  26. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2018 4:49

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  27. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:48

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  28. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:47

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  29. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:43

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  30. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2018 4:46

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  31. Content type: Commentary

    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

    Citation: Research Involvement and Engagement 2018 4:45

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  32. Content type: Protocol

    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

    Citation: Research Involvement and Engagement 2018 4:44

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  33. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:42

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  36. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:36

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  37. Content type: Methodology

    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

    Citation: Research Involvement and Engagement 2018 4:40

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  38. Content type: Methodology

    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

    Citation: Research Involvement and Engagement 2018 4:38

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  39. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:34

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  40. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:37

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  42. Content type: Research article

    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…

    Citation: Research Involvement and Engagement 2018 4:35

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  43. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:32

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  44. Content type: Protocol

    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

    Citation: Research Involvement and Engagement 2018 4:30

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  45. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:29

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  46. Content type: Editorial

    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

    Citation: Research Involvement and Engagement 2018 4:31

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  47. Content type: 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

    Citation: Research Involvement and Engagement 2018 4:28

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  48. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:27

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  49. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:26

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  50. Content type: Research article

    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

    Citation: Research Involvement and Engagement 2018 4:24

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Research Involvement and Engagement

ISSN: 2056-7529

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