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  1. The objective of this paper is to describe the activities, challenges and mitigation strategies, lessons learned and reflections on the importance of engagement from the first year of the Canadian Consortium o...

    Authors: Ellen Snowball, Rosette Fernandez Loughlin, Heather Eagleson, Karen Myers Barnett, Emily McLellan, Denis O’Connor, Catherine Kelly, Christine Thelker, Katherine S. McGilton and Jennifer Bethell
    Citation: Research Involvement and Engagement 2022 8:28
  2. Scoping reviews of health research are increasing in popularity. However, only a minority of scoping reviews in this sector engage patients and caregivers as co-producers of the research. Despite developments ...

    Authors: Nebojša Oravec, Caroline Monnin, April Gregora, Brian Bjorklund, Mudra G. Dave, Annette S. H. Schultz and Anna M. Chudyk
    Citation: Research Involvement and Engagement 2022 8:27
  3. The Research Engagement Survey Tool (REST) was developed to examine the level of partner (e.g., patients, caregivers, advocates, clinicians, community members) engagement in research studies. The REST is align...

    Authors: Melody S. Goodman, Nicole Ackermann, Zoé Haskell-Craig, Sherrill Jackson, Deborah J. Bowen and Vetta L. Sanders Thompson
    Citation: Research Involvement and Engagement 2022 8:26
  4. Patient engagement is increasingly being recognized as a critical component of health research; however, institutional models for building infrastructure and capacity for patient engagement in research are lim...

    Authors: Shelley Vanderhout, Stuart Nicholls, Zarah Monfaredi, Claudia Hampel, Lynn Ashdown, Maxime Bilodeau, Susan Rich, Beverley Shea and Dean Fergusson
    Citation: Research Involvement and Engagement 2022 8:25
  5. The overall aim of this program of research is to assess when/how patient partners are compensated financially for their contributions to health research. The research program consists of three studies to addr...

    Authors: Grace Fox, Dean A. Fergusson, Stuart G. Nicholls, Maureen Smith, Dawn Stacey and Manoj M. Lalu
    Citation: Research Involvement and Engagement 2022 8:24
  6. Peer-reviewed scientific publications and congress abstracts are typically written by scientists for specialist audiences; however, patients and other non-specialists are understandably interested in the poten...

    Authors: Laura Dormer, Thomas Schindler, Lauri Arnstein Williams, Dawn Lobban, Sheila Khawaja, Amanda Hunn, Daniela Luzuriaga Ubilla, Ify Sargeant and Anne-Marie Hamoir
    Citation: Research Involvement and Engagement 2022 8:23
  7. Europe and North America are in the grips of a devastating overdose crisis. People who use substances often feel unsafe to access healthcare due to fears of stigma, blame, judgement, poor treatment, or other r...

    Authors: Bernadette Pauly, Ginger Sullivan, Dakota Inglis, Fred Cameron, Jack Phillips, Conor Rosen, Bill Bullock, Jennifer Cartwright, Taylor Hainstock, Cindy Trytten and Karen Urbanoski
    Citation: Research Involvement and Engagement 2022 8:22
  8. There is a growing consensus among scholars, national governments, and intergovernmental organisations of the need to involve the public in decision-making around the use of artificial intelligence (AI) in soc...

    Authors: Francis McKay, Bethany J. Williams, Graham Prestwich, Darren Treanor and Nina Hallowell
    Citation: Research Involvement and Engagement 2022 8:21
  9. ‘Getting Involved in Research’ was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services.

    Authors: Carolyn Blair, Paul Best, Patricia Burns, Anne Campbell, Gavin Davidson, Joe Duffy, Anne Johnston, Berni Kelly, Campbell Killick, Denise Mac Dermott, Alan Maddock, Claire Jane McCartan, Paula McFadden, Anne McGlade, Lorna Montgomery, Sonia Patton…
    Citation: Research Involvement and Engagement 2022 8:20
  10. Considering the interdisciplinary role dental staff can play in addressing overweight and obesity in childhood, this study aimed to codesign guideline implementation strategies for children’s growth assessment...

    Authors: Amy Ruth Villarosa, Della Maneze, Lucie Michelle Ramjan, Ariana Kong and Ajesh George
    Citation: Research Involvement and Engagement 2022 8:19
  11. Standardised care pathways tailored to women/couples who experience recurrent miscarriage are needed; however, clinical practice is inconsistent and poorly organised. In this paper, we outline our processes an...

    Authors: Marita Hennessy, Laura Linehan, Rebecca Dennehy, Declan Devane, Rachel Rice, Sarah Meaney and Keelin O’Donoghue
    Citation: Research Involvement and Engagement 2022 8:18
  12. Authors: Rebecca Foster, Hannah Carver, Jason Wallace, Alex Dunedin, Stan Burridge, Philip Foley, Bernie Pauly and Tessa Parkes
    Citation: Research Involvement and Engagement 2022 8:17

    The original article was published in Research Involvement and Engagement 2021 7:82

  13. The English schools-based human papillomavirus (HPV) vaccination programme is routinely offered to all young people aged 12–13 years, to prevent cancers affecting the cervix, vulva, vagina, penis, anus and mou...

    Authors: Harriet Fisher, Tracey Chantler, Adam Finn, Joanna Kesten, Matthew Hickman, Louise Letley, Sandra Mounier-Jack, Clare Thomas, Katie Worthington, Julie Yates and Suzanne Audrey
    Citation: Research Involvement and Engagement 2022 8:16
  14. Authors: Jane Taylor, Sjouke Dekker, Diny Jurg, Jon Skandsen, Maureen Grossman, Anne-Karien Marijnissen, Christoph Ladel, Ali Mobasheri, Jon Larkin, Harrie Weinans and Irene Kanter-Schlifke
    Citation: Research Involvement and Engagement 2022 8:15

    The original article was published in Research Involvement and Engagement 2021 7:24

  15. Men of African ancestry are at increased risk of developing prostate cancer (PrCa) compared to men from other backgrounds. The PROFILE study aims to understand whether genetic information can better target who...

    Authors: Emma Hainsworth, Eva McGrowder, Jana McHugh, Elizabeth Bancroft, Sean Mahabir, Winston Webber, Rosalind Eeles and Susanne Cruickshank
    Citation: Research Involvement and Engagement 2022 8:14
  16. Patient and public involvement (PPI) is integral to research on patient safety in the NIHR Greater Manchester Patient Safety Translational Research Centre (NIHR GMPSTRC), and is central to our patient safety r...

    Authors: Isabel Adeyemi, Caroline Sanders, Bie Nio Ong, Kelly Howells, Leah Quinlivan, Louise Gorman, Sally Giles, Mat Amp, Elizabeth Monaghan, Sumaira Naseem, Adam Pearson and Sudeh Cheraghi-Sohi
    Citation: Research Involvement and Engagement 2022 8:13
  17. Patient advocates are increasingly authoring peer-reviewed publications that could enhance patient care and understanding of the lived experience. Although patient authorship may be seen as an innovation in th...

    Authors: Jacqui Oliver, Dawn Lobban, Laura Dormer, Joanne Walker, Richard Stephens and Karen Woolley
    Citation: Research Involvement and Engagement 2022 8:12
  18. Screening for lung cancer with low dose CT can facilitate the detection of early-stage lung cancers that are amenable to treatment, reducing mortality related to lung cancer. Individuals are considered eligibl...

    Authors: Ambreen Sayani, Jackie Manthorne, Erika Nicholson, Gary Bloch, Janet A. Parsons, Stephen W. Hwang, Bikila Amenu, Howard Freedman, Marlene Rathbone, Tara Jeji, Nadine Wathen, Annette J. Browne, Colleen Varcoe and Aisha Lofters
    Citation: Research Involvement and Engagement 2022 8:11
  19. Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child’s needs. However, i...

    Authors: Laura S. Nixon, Nicky Hudson, Lorraine Culley, Maya Lakhanpaul, Noelle Robertson, Mark R. D. Johnson, Melanie McFeeters, Narynder Johal, Charlotte Hamlyn-Williams, Yebeen Ysabelle Boo and Monica Lakhanpaul
    Citation: Research Involvement and Engagement 2022 8:9
  20. There is a growing need to involve patients in the development of patient safety interventions. Mental health services, despite their strong history of patient involvement, have been slow to develop patient sa...

    Authors: Lyn Brierley-Jones, Lauren Ramsey, Krysia Canvin, Sarah Kendal and John Baker
    Citation: Research Involvement and Engagement 2022 8:8
  21. Research that engages patients on the research team is often supported by grant funding from different organizations and, in some cases, principal investigators (who control the grant funding) provide patient ...

    Authors: Dawn P. Richards, Kelly D. Cobey, Laurie Proulx, Shoba Dawson, Maarten de Wit and Karine Toupin-April
    Citation: Research Involvement and Engagement 2022 8:7
  22. Current best practice recommends group-based pain management programmes for long-term improvements in persistent pain-related disability. However, there are barriers for people to access in-person delivered pa...

    Authors: Meredith A. Perry, Hemakumar Devan, Cheryl Davies, Dagmar Hempel, Tristram Ingham, Bernadette Jones, Susan Reid, Barbara Saipe and Leigh Hale
    Citation: Research Involvement and Engagement 2022 8:6
  23. Arthrogryposis multiplex congenita (AMC) is a group of rare congenital disorders characterized by multiple joint contractures present at birth. Contractures can affect different body areas and impact activitie...

    Authors: Noémi Dahan-Oliel, Sarah Cachecho, Alicja Fąfara, Francis Lacombe, Ani Samargian and André Bussières
    Citation: Research Involvement and Engagement 2022 8:5
  24. Carnegie UK (CUK) and National Institute for Health Research (NIHR) INVOLVE held a meeting on the co-production of research, how we work together on equal terms. We brought together public contributors and ind...

    Authors: Sophie Staniszewska, Gary Hickey, Pippa Coutts, Ben Thurman and Tina Coldham
    Citation: Research Involvement and Engagement 2022 8:4
  25. Little is known about the extent, perceptions or experiences of consumers involved in clinical trials across Australia. The purpose of this National study was to better understand the activity and perceptions ...

    Authors: Anne McKenzie, Janelle Bowden, John R. Zalcberg, Karena Conroy, Julia Fallon-Ferguson, Shilpanjali Jesudason, James Ansell, Ania Anderst and Nicola Straiton
    Citation: Research Involvement and Engagement 2022 8:3
  26. Patient engagement in research, a collaborative practice of including patients and families as active and respected partners in the research process, leads to improved quality of patient care and positively af...

    Authors: Francine Buchanan, Amy Peasgood, Megan Easton, Karen Haas and Unni Narayanan
    Citation: Research Involvement and Engagement 2022 8:2
  27. The biopharmaceutical industry is challenged with efficiently delivering medicines that patients truly value. This can be addressed by engaging patients and caregivers throughout a medicine’s life cycle, ensur...

    Authors: Oleks Gorbenko, Pascale Cavillon, Rachel H. Giles, Teodora Kolarova, Muriël Marks, Antonella Cardone, Sandeep Bagga and Claire Nolan
    Citation: Research Involvement and Engagement 2022 8:1
  28. There is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived...

    Authors: Maria Haak, Synneve Ivanoff, Emmelie Barenfeld, Isak Berge and Qarin Lood
    Citation: Research Involvement and Engagement 2021 7:91
  29. Meaningful public involvement in maternity research remains challenging, partly due to the transient nature of pregnancy. This paper reflects on the development, implementation and simple evaluation of an inno...

    Authors: Laura Goodwin, Magdalena Skrybant and Sara Kenyon
    Citation: Research Involvement and Engagement 2021 7:90
  30. Patient and Public Involvement and Engagement (PPIE) in research positively affects the relevance, quality, and impact of research. Around 11% of studies published in leading medical journals demonstrate PPIE....

    Authors: Richard Gray, Catherine Brasier, Tessa-May Zirnsak and Ashley H. Ng
    Citation: Research Involvement and Engagement 2021 7:88
  31. Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute f...

    Authors: Alison M. Aries, Paul Bailey and Susan M. Hunter
    Citation: Research Involvement and Engagement 2021 7:87
  32. Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) communi...

    Authors: Emily M. Godfrey, Erin K. Thayer, Laura Mentch, Traci M. Kazmerski, Georgia Brown, Molly Pam and Morhaf Al Achkar
    Citation: Research Involvement and Engagement 2021 7:86
  33. The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collect...

    Authors: Nicola Small, Bie Nio Ong, Annmarie Lewis, Dawn Allen, Nigel Bagshaw, Papreen Nahar and Caroline Sanders
    Citation: Research Involvement and Engagement 2021 7:85
  34. The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Allia...

    Authors: Janet L. Wale, Louisa Di Pietro, Heather Renton, Margaret Sahhar, Christine Walker, Pamela Williams, Karen Meehan, Elly Lynch, Melissa Martyn, Jane Bell, Ingrid Winship and Clara L. Gaff
    Citation: Research Involvement and Engagement 2021 7:84
  35. In some jurisdictions, patients and patient groups may be invited to provide input when Health Technology Assessment (HTA) is used to inform decisions about which medicines should be subsidised or funded. This...

    Authors: Ann Single, Ariana Cabrera, Simon Fifer, Jane Tsai, Jin-Young Paik and Philip Hope
    Citation: Research Involvement and Engagement 2021 7:83
  36. Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of ...

    Authors: Rebecca Foster, Hannah Carver, Jason Wallace, Alex Dunedin, Stan Burridge, Philip Foley, Bernie Pauly and Tessa Parkes
    Citation: Research Involvement and Engagement 2021 7:82

    The Correction to this article has been published in Research Involvement and Engagement 2022 8:17

  37. ReIMAGINE aims to improve the current prostate specific antigen (PSA)/biopsy risk stratification for prostate cancer (PCa) and develop a new image-based method (with biomarkers) for diagnosing high/low risk PC...

    Authors: S. Green, S. Tuck, J. Long, T. Green, A. Green, P. Ellis, A. Haire, C. Moss, F. Cahill, N. McCartan, L. Brown, A. Santaolalla, T. Marsden, M. Rodriquez Justo, J. Hadley, S. Punwani…
    Citation: Research Involvement and Engagement 2021 7:81
  38. Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/o...

    Authors: Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson and Steven M. Schmidt
    Citation: Research Involvement and Engagement 2021 7:80
  39. Immigrants often find accessing and navigating the healthcare system difficult upon arriving in Canada. Existing challenges of accessing healthcare due to differing cultural norms, language barriers, limited h...

    Authors: Lindsey Boechler, Steven Renwick, Abdullateef Alabi, Harold de la Torre, Susheel Kumar, Harmanpreet Singh, Roshan Xavier, Dalise Hector, Lauren McTaggart and Jennifer Shrubsole
    Citation: Research Involvement and Engagement 2021 7:79
  40. Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study e...

    Authors: Kinga Pozniak, Francine Buchanan, Andrea Cross, Jennifer Crowson, Barb Galuppi, Danijela Grahovac, Jan Willem Gorter, Oksana Hlyva, Marjolijn Ketelaar, Olaf Kraus de Camargo, Manda Krpan Mesic, Rachel Martens, Dayle McCauley, Linda Nguyen, Robert J. Palisano, Michelle Phoenix…
    Citation: Research Involvement and Engagement 2021 7:78
  41. This paper describes a model developed by an interdisciplinary team of research and public engagement specialists, with backgrounds in health and social care research, higher education, evidence-based practice...

    Authors: Heidi Ormstad, Gro Jamtvedt, Ida Svege and Sally Crowe
    Citation: Research Involvement and Engagement 2021 7:77
  42. In the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despi...

    Authors: Melissa Courvoisier, Richelle Baddeliyanage, Linda Wilhelm, Lorraine Bayliss, Sharon E. Straus and Christine Fahim
    Citation: Research Involvement and Engagement 2021 7:76
  43. Participating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disprop...

    Authors: Marjory Charlot, Kelsi Carolan, Cyrena Gawuga, Elmer Freeman and Linda Sprague Martinez
    Citation: Research Involvement and Engagement 2021 7:74
  44. During the COVID-19 pandemic many work tasks are being done remotely through digital meetings, including PPI in research. Yet, some PPI activities have been paused or cancelled altogether during the pandemic. ...

    Authors: Elin Lampa, Björn Sonnentheil, Antónia Tökés and Georgina Warner
    Citation: Research Involvement and Engagement 2021 7:73
  45. Patient-oriented research affords individuals with opportunities to genuinely contribute to health care research as members of research teams. While checklists and frameworks can support academic researchers’ ...

    Authors: Elaine Zibrowski, Tracey Carr, Shelagh McDonald, Heather Thiessen, Ray van Dusen, Donna Goodridge, Charlene Haver, Darcy Marciniuk, Christine Stobart, Tanya Verrall and Gary Groot
    Citation: Research Involvement and Engagement 2021 7:72
  46. The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff i...

    Authors: Stephanie A. Chamberlain, Andrea Gruneir, Janice M. Keefe, Charlotte Berendonk, Kyle Corbett, Roberta Bishop, Graham Bond, Faye Forbes, Barbara Kieloch, Jim Mann, Christine Thelker and Carole A. Estabrooks
    Citation: Research Involvement and Engagement 2021 7:71
  47. To improve health equity, as well as equity in research, community-engaged research and participatory research needs to be inclusive. Equity in health research refers to the principle that anyone affected by r...

    Authors: Christine Loignon, Sophie Dupéré, Caroline Leblanc, Karoline Truchon, Amélie Bouchard, Johanne Arsenault, Julia Pinheiro Carvalho, Alexandrine Boudreault-Fournier and Sylvain Aimé Marcotte
    Citation: Research Involvement and Engagement 2021 7:70

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