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  1. Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health pro...

    Authors: Leah E. Getchell, Marian Reich, Selina Allu, Cathy Woods, Teresa Atkinson, Mary Beaucage, Leanne Stalker, Dwight Sparkes, Catherine Turner, Audrey L’Esperance, Kevin Burns, Meghan J. Elliott, Helen Chiu, Norman D. Rosenblum and Ruth Sapir-Pichhadze
    Citation: Research Involvement and Engagement 2023 9:57
  2. The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involveme...

    Authors: Helle Pappot, Sara Kaa Meier, Maiken Hjerming, Karin Piil and Signe Hanghøj
    Citation: Research Involvement and Engagement 2023 9:56
  3. There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is a...

    Authors: Patrick G. McPhee, Kinga Pozniak, Mary A. Khetani, Wenonah Campbell, Leah Dix and Michelle Phoenix
    Citation: Research Involvement and Engagement 2023 9:55
  4. In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and...

    Authors: Samantha K. Micsinszki, Nadia L. Tanel, Julia Kowal, Gillian King, Dolly Menna-Dack, Angel Chu, Kathryn Parker and Michelle Phoenix
    Citation: Research Involvement and Engagement 2023 9:54
  5. Integrated knowledge translation (IKT) is a partnered approach to research that aims to ensure research findings are applied in practice and policy. IKT can be used during diffusion and dissemination of resear...

    Authors: Alanna Shwed, Femke Hoekstra, DivyaKanwar Bhati, Peter Athanasopoulos, John Chernesky, Kathleen Martin Ginis, Christopher B. McBride, W. Ben Mortenson, Kathryn M. Sibley, Shane N. Sweet and Heather L. Gainforth
    Citation: Research Involvement and Engagement 2023 9:53
  6. Systematic reviews summarize and evaluate relevant studies to contribute to evidence-based practice. Internationally, researchers have reached a consensus that the active involvement of the public leads to bet...

    Authors: Mike Rommerskirch-Manietta, Christina Manietta, Anna Louisa Hoffmann, Helga Rohra, Dianne Gove, Birgit Alpers, Lillian Hung, Carol R. Geary, Katherine M. Abbott, Lily Haopu Ren, Stefanie Oberfeld, Ana Diaz and Martina Roes
    Citation: Research Involvement and Engagement 2023 9:52
  7. Globally, health systems are increasingly striving to deliver evidence based care that improves patients’, caregivers’ and communities’ health outcomes. To deliver this care, more systems are engaging these gr...

    Authors: Nakia K. Lee-Foon, Maureen Smith, Sarah M. Greene, Kerry Kuluski and Robert J. Reid
    Citation: Research Involvement and Engagement 2023 9:51
  8. Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-orient...

    Authors: Samantha Yimeng Dong, Linda Nguyen, Andrea Cross, Amanda Doherty-Kirby, Jessica Geboers, Dayle McCauley, Alice Kelen Soper, Amanda St. Dennis, Danny Steeves, Natasha Trehan and Jan Willem Gorter
    Citation: Research Involvement and Engagement 2023 9:50
  9. Patients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare sett...

    Authors: Victor Do, Francine Buchanan, Peter Gill, David Nicholas, Gita Wahi, Zia Bismilla, Maitreya Coffey, Kim Zhou, Ann Bayliss, Presanna Selliah, Karen Sappleton and Sanjay Mahant
    Citation: Research Involvement and Engagement 2023 9:49
  10. Patient and public involvement (PPI) in health research may improve both the relevance and quality of the research. There is however a lack of research investigating the experiences, attitudes and barriers tow...

    Authors: Sigve Nyvik Aas, Marita Borg Distefano, Ingvild Pettersen, Berit Gravrok, Laila Yvonne Nordvoll, Jon Fauskanger Bjaastad and Sameline Grimsgaard
    Citation: Research Involvement and Engagement 2023 9:48
  11. Current practices for engaging patients in patient-oriented research (POR) result in a narrow pool of patient perspectives being reflected in POR. This project aims to address gaps in methodological knowledge ...

    Authors: Erin E. Michalak, Iva W. Cheung, Elsy Willis, Rachelle Hole, Beverley Pomeroy, Emma Morton, Sahil S. Kanani and Steven J. Barnes
    Citation: Research Involvement and Engagement 2023 9:47
  12. In Community-Based Participatory Research (CBPR), people with shared lived experiences (co-researchers) identify priority needs and work collaboratively to co-design an action-oriented research advocacy projec...

    Authors: Saania Tariq, Eshleen K. Grewal, Roland Booth, B. Nat, Thami Ka-Caleni, Matt Larsen, Justin Lawson, Anna Whaley, Christine A. Walsh and David J. T. Campbell
    Citation: Research Involvement and Engagement 2023 9:46
  13. Patient and public involvement in health economic evaluation is still relatively rare, compared to other areas of health and social care research. Developing stronger patient and public involvement in health e...

    Authors: Sophie Staniszewska, Ivett Jakab, Eric Low, Jean Mossman, Phil Posner, Don Husereau, Richard Stephens and Michael Drummond
    Citation: Research Involvement and Engagement 2023 9:45
  14. Individuals with intellectual and developmental disabilities are often the subject of research while rarely being included in formulating research questions, planning studies, and making decisions related to p...

    Authors: Anna-Mariya Kirova, Tyler Jakab, Graham Bartsch, Stephanie Corazzini, Alexis Sokoloff, Erin Delahunty, Rachel Seymour and Eric Rubenstein
    Citation: Research Involvement and Engagement 2023 9:44
  15. Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels...

    Authors: Anne Wettergren Karlsson, Anne Kragh-Sørensen, Kirsten Børgesen, Karsten Erik Behrens, Torben Andersen, Maiken Langhoff Kidholm, Mette Juel Rothmann, Marjolijn Ketelaar and Astrid Janssens
    Citation: Research Involvement and Engagement 2023 9:43
  16. Patient and Public Involvement and Engagement (PPIE) in research is recognised by the National Institute for Health and Care Research as crucial for high quality research with practical benefit for patients an...

    Authors: Rhiannon E. Hawkes, Caroline Sanders, Claudia Soiland-Reyes, Lisa Brunton, Kelly Howells, Sarah Cotterill, Carole Bennett, Eric Lowndes, Manoj Mistry, Helen Wallworth and Peter Bower
    Citation: Research Involvement and Engagement 2023 9:42
  17. As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to “me...

    Authors: Dawn P. Richards, Sabrina Poirier, Vina Mohabir, Laurie Proulx, Sue Robins and Jeffery Smith
    Citation: Research Involvement and Engagement 2023 9:41
  18. Participatory arts are increasingly recognised as a valuable and accessible mechanism for giving a voice to the experiences of individuals’ health and healthcare. In recent years, there has been a move towards...

    Authors: Stephanie Gillibrand, Paul Hine, Rob Conyers, Jason Gravestock, Cole Walsh, Aneela McAvoy and Caroline Sanders
    Citation: Research Involvement and Engagement 2023 9:40
  19. Achieving effective community engagement has been an objective of U.S. National Institutes of Health-funded HIV research efforts, including participation of persons with HIV. Community Advisory Boards (CABs) h...

    Authors: Karine Dubé, Beth Peterson, Nora L. Jones, Amy Onorato, William B. Carter, Christine Dannaway, Steven Johnson, Roy Hayes, Marcus Hill, Rease Maddox, James L. Riley, Jane Shull, David Metzger and Luis J. Montaner
    Citation: Research Involvement and Engagement 2023 9:39
  20. Public involvement (often referred to as patient and public involvement or PPI) integrates the voices of the public in health and care research. However, groups such as care home residents are often excluded f...

    Authors: Tanisha Burgher, Victoria Shepherd and Claire Nollett
    Citation: Research Involvement and Engagement 2023 9:38
  21. Patient and public involvement (PPI) is increasingly seen as essential to health service research. There are strong moral and ethical arguments for good quality PPI. Despite the development of guidance aimed a...

    Authors: Alice Moult, Carmel McGrath, Kate Lippiett, Caroline Coope, Simon Chilcott, Cindy Mann, Nicola Evans, Andrew Turner, Krysia Dziedzic, M. C. Portillo and Rachel Johnson
    Citation: Research Involvement and Engagement 2023 9:37
  22. Policymakers and practitioners in health promotion (e.g. those working for local, state or federal government organisations or community and non-government organisations with a focus on health and wellbeing) a...

    Authors: Samantha Rowbotham, Pippy Walker, Leah Marks, Michelle Irving, Ben J. Smith and Yvonne Laird
    Citation: Research Involvement and Engagement 2023 9:36
  23. Patients themselves are best placed to provide insights on the lived experience and to lead the analysis of such insights to bring the patient voice into peer-reviewed literature. In doing so, they can meet th...

    Authors: Dawn Lobban, Jacqui Oliver, Kelly Davio, Kenza Seddik and Veronica Porkess
    Citation: Research Involvement and Engagement 2023 9:35
  24. Patient and Public Involvement (PPI) in clinical trial research is recognised as relevant but the active involvement of patients and the public in basic science or laboratory-based research is seen as more cha...

    Authors: Erika Neves Aquino, Paul Moss, Mo Hafeez, Robert Jasper, Tony Kelly, Lynn Laidlaw and Vivienne Wilkes
    Citation: Research Involvement and Engagement 2023 9:34
  25. The involvement of young people as peer researchers, especially with lived experience, is increasingly considered important in youth mental health research. Yet, there is variation in the understanding of the ...

    Authors: Inga Spuerck, Milos Stankovic, Syeda Zeenat Fatima, Elmas Yilmas, Nicholas Morgan, Jenna Jacob, Julian Edbrooke-Childs and Panos Vostanis
    Citation: Research Involvement and Engagement 2023 9:33
  26. There is growing recognition that engaging people with lived experience (PWLE) in mental health and substance use research improves the quality of the research in terms of relevance to the population and the f...

    Authors: Lisa D. Hawke, Natasha Y. Sheikhan, Sara Roberts and Shelby McKee
    Citation: Research Involvement and Engagement 2023 9:32
  27. Public and patient involvement and engagement (PPIE) is an important part of research. The inclusion of PPIE in research is becoming more widespread, however, there are some areas where it is still uncommon. F...

    Authors: Niall McGrane, Paul Dunbar and Laura M. Keyes
    Citation: Research Involvement and Engagement 2023 9:31
  28. Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved i...

    Authors: Annie Keane, Safina Islam, Suzanne Parsons, Arpana Verma, Tracey Farragher, Davine Forde, Leah Holmes, Katharine Cresswell, Susannah Williams, Paolo Arru, Emily Howlett, Hannah Turner-Uaandja, Issy MacGregor, Tracy Grey, Zahra Arain, Maura Scahill…
    Citation: Research Involvement and Engagement 2023 9:30
  29. Public and patient involvement aims to improve research quality, relevance, and appropriateness. Despite an increasing evidence base on the influence of public involvement in health research, the role of invol...

    Authors: Nikita N. Burke, Derek Stewart, Theresa Tierney, Andrew Worrall, Maureen Smith, Jim Elliott, Claire Beecher, Declan Devane and Linda Biesty
    Citation: Research Involvement and Engagement 2023 9:29
  30. There are growing calls for cancer screening to become more personalised by considering a range of risk factors, rather than a one-size-fits-all, age-based approach. The aim of this public involvement was to c...

    Authors: Joanne Marie Cairns, Helen Roberts, Geraldine Al-Khafaji and Maria Kwater
    Citation: Research Involvement and Engagement 2023 9:28
  31. Established in 2015, the Multi-Stakeholder Engagement (MuSE) Consortium is an international network of over 120 individuals interested in stakeholder engagement in research and guidelines. The MuSE group is de...

    Authors: Jennifer Petkovic, Olivia Magwood, Lyubov Lytvyn, Joanne Khabsa, Thomas W. Concannon, Vivian Welch, Alex Todhunter-Brown, Marisha E. Palm, Elie A. Akl, Lawrence Mbuagbaw, Thurayya Arayssi, Marc T. Avey, Ana Marusic, Richard Morley, Michael Saginur, Nevilene Slingers…
    Citation: Research Involvement and Engagement 2023 9:27
  32. Identity is how we understand ourselves and others through the roles or social groups we occupy. This review focuses on lived experience researchers and providers and the impact of these roles on identity. Liv...

    Authors: Veenu Gupta, Catrin Eames, Laura Golding, Beth Greenhill, Robert Qi, Stephanie Allan, Alison Bryant and Peter Fisher
    Citation: Research Involvement and Engagement 2023 9:26
  33. Co-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palli...

    Authors: Jodie Crooks, Kate Flemming, Caroline Shulman and Briony Hudson
    Citation: Research Involvement and Engagement 2023 9:25
  34. People living with heart failure (HF) are particularly vulnerable after hospital discharge. An alliance between patient authors, clinicians, industry, and co-developers of HF programs can represent an effectiv...

    Authors: Javed Butler, Mark C. Petrie, Marc Bains, Tracy Bawtinheimer, Jillianne Code, Teresa Levitch, Elmas Malvolti, Pasquale Monteleone, Petrina Stevens, Jenny Vafeiadou and Carolyn S. P. Lam
    Citation: Research Involvement and Engagement 2023 9:23
  35. Implicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experienc...

    Authors: Marie-Mychèle Pratte, Sophie Audette-Chapdelaine, Anne-Marie Auger, Catherine Wilhelmy and Magaly Brodeur
    Citation: Research Involvement and Engagement 2023 9:22
  36. There is growing recognition of the importance of patient and public stakeholder involvement (PPI) in patient preference research. However, limited evidence exists regarding the impact, barriers and enablers o...

    Authors: Meredith Y. Smith, Rosanne Janssens, A. Cecilia Jimenez-Moreno, Irina Cleemput, Mireille Muller, Serena Oliveri, Gwenda Simons, Valentina Strammiello, Isabelle Huys and Marie Falahee
    Citation: Research Involvement and Engagement 2023 9:21
  37. Patient involvement in health research is rarely driven solely by patients, who could be considered to have the highest degree of investment in such research. In the Kidney Connect project, the patients have b...

    Authors: Henning Søndergaard, Malene Deele, Hanne Agerskov, Kirsten Lomborg and Jeanette Finderup
    Citation: Research Involvement and Engagement 2023 9:20
  38. Talking about breathlessness can be emotionally challenging. People can feel a sense of illegitimacy and discomfort in some research contexts. Comic-based illustration (cartooning) offers an opportunity to com...

    Authors: Samantha L. Harrison, Julian Lawrence, Sophie Suri, Tim Rapley, Kirsti Loughran, James Edwards, Louise Roberts, Denis Martin and Joanne E. Lally
    Citation: Research Involvement and Engagement 2023 9:19
  39. The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated wit...

    Authors: Grace M. Turner, Christel McMullan, Olalekan Lee Aiyegbusi, Sarah E. Hughes, Anita Walker, Felicity Jeyes, Yvonne Adler, Amy Chong, Lewis Buckland, David Stanton, Elin Haf Davies, Shamil Haroon and Melanie Calvert
    Citation: Research Involvement and Engagement 2023 9:18
  40. Community engagement in research is widely accepted as best practice, despite gaps in existing frameworks to evaluate its process, context, and impact on research. The Screening in High Schools to Identify, Ev...

    Authors: Alicia M. Hoke, Perri Rosen, Francesca Pileggi, Alissa Molinari and Deepa L. Sekhar
    Citation: Research Involvement and Engagement 2023 9:17
  41. Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to iden...

    Authors: Anna De Simoni, Tracy Jackson, Wendy Inglis Humphrey, Jennifer Preston, Heather Mah, Helen E. Wood, Emma Kinley, Laura Gonzalez Rienda and Carol Porteous
    Citation: Research Involvement and Engagement 2023 9:16
  42. Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to as...

    Authors: Afrodita Marcu, Fiona McGregor, Bernadette Egan, Kate Hill, Tim Cook and Anne Arber
    Citation: Research Involvement and Engagement 2023 9:15
  43. The importance of involving members of the public in the development, implementation and dissemination of research is increasingly recognised. There have been calls to share examples of how this can be done, a...

    Authors: Lynn McVey, Tina Frost, Basma Issa, Eva Davison, Jamil Abdulkader, Rebecca Randell, Natasha Alvarado, Hadar Zaman, Nicholas Hardiker, V.-Lin Cheong and David Woodcock
    Citation: Research Involvement and Engagement 2023 9:14
  44. In response to racial inequity in asthma, asthma-related research among diverse patients is vital. However, people from historically marginalized groups are underrepresented in clinical and patient-centered ou...

    Authors: LeRoy Graham, Mary Hart, Michael Stinson, Rhoda Moise, Lynda Mitchell, Tonya A. Winders and Donna D. Gardner
    Citation: Research Involvement and Engagement 2023 9:13
  45. Long-term care (LTC) settings have been disproportionately affected by the COVID-19 pandemic; it is important to address unmet needs and explore practical strategies for supporting LTC residents and staff. The...

    Authors: Lillian Hung, Charlie Lake, Ali Hussein, Joey Wong and Jim Mann
    Citation: Research Involvement and Engagement 2023 9:12
  46. Children and young people’s (CYP) involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involvi...

    Authors: Louca-Mai Brady, Jacqueline Miller, Eleri McFarlane-Rose, Jasmine Noor, Rhianne Noor and Annegret Dahlmann-Noor
    Citation: Research Involvement and Engagement 2023 9:11
  47. Co-creation is a method to develop acceptable, contextually appropriate and potentially more effective interventions. Adolescents with intellectual disabilities (ID) seldomly participate in research and progra...

    Authors: Laura Maenhout, Maïté Verloigne, Deborah Cairns, Greet Cardon, Geert Crombez, Craig Melville, Geert Van Hove and Sofie Compernolle
    Citation: Research Involvement and Engagement 2023 9:10
  48. Participatory research has been described to improve the relevance of research findings for the society in terms of quality of healthcare services and other public benefits. Nevertheless, there is limited guid...

    Authors: Qarin Lood, Roar Hermansen Østby, Sara Hultqvist, David Edvardsson and Synneve Dahlin-Ivanoff
    Citation: Research Involvement and Engagement 2023 9:9
  49. Consumer and community involvement (CCI) in health research is increasingly recognised as best practice and is closely linked with calls for epistemic justice and more transparent university collaborations wit...

    Authors: Ruth Cox, Matthew Molineux, Melissa Kendall, Bernadette Tanner and Elizabeth Miller
    Citation: Research Involvement and Engagement 2023 9:8

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