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  1. 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

  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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

  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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: Jim Mann, Roberta Bishop, Graham Bond, Faye Forbes, Barbara Kieloch, Christine Thelker and Stephanie A. Chamberlain
    Citation: Research Involvement and Engagement 2021 7:69
  36. Power assisted exercise is accessible and acceptable for people with stroke. The potential for technological advancement of the equipment to improve the user experience has been identified. Involvement of end ...

    Authors: Rachel Young, Karen Sage, David Broom, Katherine Broomfield, Gavin Church and Christine Smith
    Citation: Research Involvement and Engagement 2021 7:68
  37. Patient and public involvement and engagement (PPIE) is recognised as an essential part of health research. In addition to providing an opportunity for patients to shape health research and acquire research sk...

    Authors: Anne Aboaja, Oluwatosin Atewogboye, Mudassar Arslan, Lucia Parry-Newton and Lindsey Wilson
    Citation: Research Involvement and Engagement 2021 7:67
  38. Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not research...

    Authors: Sally Crowe, Eleanor Barker, Meg Roberts, Lucy Lloyd, Clara M. de Barros, Ben Rebelo-Harris, Catherine Meads and Catherine L. Saunders
    Citation: Research Involvement and Engagement 2021 7:64
  39. Core outcome sets (COS) are lists of consensus-determined outcomes to be measured and reported in all clinical research studies within a disease area. While including patients and families in COS development t...

    Authors: Shelley M. Vanderhout, Maureen Smith, Nicole Pallone, Kylie Tingley, Michael Pugliese, Pranesh Chakraborty, Sylvia Stockler, Martin Offringa, Nancy Butcher, Stuart G. Nicholls and Beth K. Potter
    Citation: Research Involvement and Engagement 2021 7:66
  40. There is an apparent reluctance to engage ‘vulnerable’ participants in conversation about sensitive topics such as suicide and violence and this can often lead to a paucity of research in these areas. This stu...

    Authors: Laura Hemming, Daniel Pratt, Gillian Haddock, Peer Bhatti and Jennifer Shaw
    Citation: Research Involvement and Engagement 2021 7:65
  41. Involving patients and their carers in research has become more common, as funders demand evidence of involvement. The ‘Patient Voice in Cancer Research’ (PVCR) is an initiative led by University College Dubli...

    Authors: Éidín Ní Shé, Aoife Gordan, Barbara Hughes, Tom Hope, Teresa McNally, Ramon Whelan, Mary Staunton, Margaret Grayson, Liane Hazell, Iseult Wilson, Richard Stephens, Elaine Quinn and Amanda McCann
    Citation: Research Involvement and Engagement 2021 7:63
  42. This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to ...

    Authors: Soren Eik Skovlund, Lise H. Troelsen, Lotte Klim, Poul Erik Jakobsen and Niels Ejskjaer
    Citation: Research Involvement and Engagement 2021 7:62
  43. Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. ...

    Authors: Mareike Dreier, Johanna Baumgardt, Thomas Bock, Martin Härter and Sarah Liebherz
    Citation: Research Involvement and Engagement 2021 7:60
  44. Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse ...

    Authors: N. S. Goedhart, C. A. C. M. Pittens, S. Tončinić, T. Zuiderent-Jerak, C. Dedding and J. E. W. Broerse
    Citation: Research Involvement and Engagement 2021 7:59
  45. A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is...

    Authors: Elly Park, Mary Forhan and C. Allyson Jones
    Citation: Research Involvement and Engagement 2021 7:58
  46. The effective impact of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical ...

    Authors: David Feldman, Paola Kruger, Laure Delbecque, Ashley Duenas, Oana Bernard-Poenaru, Séverine Wollenschneider, Nick Hicks, Janine Ann Reed, Ify Sargeant, Chi Pakarinen and Anne-Marie Hamoir
    Citation: Research Involvement and Engagement 2021 7:57

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