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  1. 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

    Content type: Research article

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  2. 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

    Content type: Commentary

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  3. 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

    Content type: Research article

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  4. 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

    Content type: Research article

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  5. 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

    Content type: Research article

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  6. 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

    Content type: Commentary

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  7. 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

    Content type: Commentary

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  8. 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

    Content type: Protocol

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  9. 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

    Content type: Research article

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  12. 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

    Content type: Research article

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  13. 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

    Content type: Methodology

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  14. 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

    Content type: Methodology

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  15. 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

    Content type: Research article

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  16. 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

    Content type: Research article

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  18. 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

    Content type: Research article

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  19. 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

    Content type: Research article

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  20. 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

    Content type: Protocol

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  21. 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

    Content type: Research article

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  22. 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

    Content type: Editorial

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  23. 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

    Content type: Protocol

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  24. 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

    Content type: Research article

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  25. 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

    Content type: Research article

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  26. 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

    Content type: Research article

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  27. 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

    Citation: Research Involvement and Engagement 2018 4:23

    Content type: Commentary

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  28. 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

    Citation: Research Involvement and Engagement 2018 4:25

    Content type: Letter

    Published on:

    The original article was published in Research Involvement and Engagement 2018 4:7

  29. 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

    Citation: Research Involvement and Engagement 2018 4:22

    Content type: Commentary

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  30. 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

    Citation: Research Involvement and Engagement 2018 4:21

    Content type: Commentary

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  31. 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

    Citation: Research Involvement and Engagement 2018 4:20

    Content type: Commentary

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  32. 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

    Citation: Research Involvement and Engagement 2018 4:19

    Content type: Commentary

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  33. 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

    Citation: Research Involvement and Engagement 2018 4:18

    Content type: Research article

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  34. 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

    Citation: Research Involvement and Engagement 2018 4:16

    Content type: Research article

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  35. 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

    Citation: Research Involvement and Engagement 2018 4:17

    Content type: Research article

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  36. 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

    Citation: Research Involvement and Engagement 2018 4:15

    Content type: Research article

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  37. 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

    Citation: Research Involvement and Engagement 2018 4:14

    Content type: Research article

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  38. 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

    Citation: Research Involvement and Engagement 2018 4:13

    Content type: Research article

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  40. 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

    Citation: Research Involvement and Engagement 2018 4:11

    Content type: Commentary

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  41. 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

    Citation: Research Involvement and Engagement 2018 4:9

    Content type: Commentary

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  42. 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

    Citation: Research Involvement and Engagement 2018 4:8

    Content type: Methodology

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  43. 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

    Citation: Research Involvement and Engagement 2018 4:6

    Content type: Protocol

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  44. 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

    Citation: Research Involvement and Engagement 2018 4:7

    Content type: Commentary

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    The Letter to this article has been published in Research Involvement and Engagement 2018 4:25

  45. 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

    Citation: Research Involvement and Engagement 2018 4:12

    Content type: Correction

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    The original article was published in Research Involvement and Engagement 2017 3:27

  46. 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

    Citation: Research Involvement and Engagement 2018 4:5

    Content type: Review article

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  47. 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

    Citation: Research Involvement and Engagement 2018 4:4

    Content type: Methodology

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  48. 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

    Citation: Research Involvement and Engagement 2018 4:3

    Content type: Methodology

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  50. 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

    Citation: Research Involvement and Engagement 2018 4:1

    Content type: Research article

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Research Involvement and Engagement

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