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  1. 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
  2. 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
  3. 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

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

  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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

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

  19. 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

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

  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
    Citation: Research Involvement and Engagement 2017 3:31
  25. 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
    Citation: Research Involvement and Engagement 2017 3:32

    The original article was published in Research Involvement and Engagement 2017 3:17

  26. 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
    Citation: Research Involvement and Engagement 2017 3:29
  27. 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
    Citation: Research Involvement and Engagement 2017 3:26
  28. 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
    Citation: Research Involvement and Engagement 2017 3:28
  29. 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
    Citation: Research Involvement and Engagement 2017 3:25
  30. 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…
    Citation: Research Involvement and Engagement 2017 3(Suppl 1):27

    This article is part of a Supplement: Volume 3 Supplement 1

    The Correction to this article has been published in Research Involvement and Engagement 2018 4:12

  31. 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
    Citation: Research Involvement and Engagement 2017 3:23
  32. 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
    Citation: Research Involvement and Engagement 2017 3:22
  33. 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
    Citation: Research Involvement and Engagement 2017 3:21
  34. 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
    Citation: Research Involvement and Engagement 2017 3:17

    The Correction to this article has been published in Research Involvement and Engagement 2017 3:32

  35. 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
    Citation: Research Involvement and Engagement 2017 3:19
  36. 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
    Citation: Research Involvement and Engagement 2017 3:20
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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

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