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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and mea...

    Authors: Miriam Gonzalez, Tatiana Ogourtsova, Alix Zerbo, Corinne Lalonde, Amy Spurway, Frank Gavin, Keiko Shikako, Jonathan A. Weiss and Annette Majnemer
    Citation: Research Involvement and Engagement 2023 9:7
  36. The role of patients in cancer research is undergoing a significant evolution as all stakeholders seek to enhance the level of direct patient involvement in the design and development of clinical trials. Howev...

    Authors: Alexandre B. Costa Alencar, Wendy K. D. Selig, Jan Geissler, Tamás Bereczky, Alba Ubide, David Haerry, Richard Stephens and Valerie Behan
    Citation: Research Involvement and Engagement 2023 9:6
  37. In Canada, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research (SPOR) in 2011. The strategy defines ‘patient-oriented research’ as a continuum of research that engage...

    Authors: Colin MacArthur, Rob Van Hoorn, John Lavis, Sharon Straus, Nicola Jones, Lorraine Bayliss, Amanda L. Terry, Susan Law, Charles Victor, Denis Prud’homme, John Riley and Moira Stewart
    Citation: Research Involvement and Engagement 2023 9:5
  38. There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it c...

    Authors: Daniel J. Gould, Marion Glanville-Hearst, Samantha Bunzli, Peter F. M. Choong and Michelle M. Dowsey
    Citation: Research Involvement and Engagement 2023 9:4
  39. The chronic complications of ageing with HIV are not well studied in sub-Saharan Africa (SSA) where general healthcare resources are limited. We aimed to collaborate with individuals living with HIV aged ≥ 50 ...

    Authors: Ellisiv Clarke, Grace Anderson-Saria, Aloyce Kisoli, Sarah Urasa, Susan Moloney, Ssenku Safic, Jane Rogathi, Richard Walker, Louise Robinson and Stella-Maria Paddick
    Citation: Research Involvement and Engagement 2023 9:3
  40. Public and patient involvement (PPI) through Young Person’s Advisory Groups (YPAG) enables children to provide guidance and insight into research activities. PPI is an important characteristic of research, how...

    Authors: Anna Delahunt, Sophie Callanan, Sarah Louise Killeen, Ciara M. McDonnell and Fionnuala M. McAuliffe
    Citation: Research Involvement and Engagement 2023 9:2
  41. The National Institute for Health and Care Research (NIHR) Policy Research Unit in Behavioural Science (PRU-BS) was funded to inform government on the application of behavioural science in health and social ca...

    Authors: Dave Green, Val Bryant, Stuart Edwards, Caroline Kemp, Maisie McKenzie, Sudhir Shah and Irene Soulsby
    Citation: Research Involvement and Engagement 2023 9:1
  42. Using the technique of co-production to develop research is considered good practice. Co-production involves the public, practitioners and academics working together as equals throughout a research project. Co...

    Authors: F. V. Hallam-Bowles, P. A. Logan, S. Timmons and K. R. Robinson
    Citation: Research Involvement and Engagement 2022 8:74
  43.  Within the field of patient and public involvement in health service research, there is a growing movement towards not only involving patients in research but engaging them as co-producers of knowledge. We explo...

    Authors: April Hards, Audrey Cameron, Eva Sullivan and Jude Kornelsen
    Citation: Research Involvement and Engagement 2022 8:73
  44. Citizen engagement, or partnering with interested members of the public in health research, is becoming more common. While ongoing assessment of citizen engagement practices is considered important to its succ...

    Authors: Anmol Shahid, Inara N. Lalani, Brianna K. Rosgen, Bonnie G. Sept, Shelly Longmore, Jeanna Parsons Leigh, Henry T. Stelfox and Kirsten M. Fiest
    Citation: Research Involvement and Engagement 2022 8:72
  45. Research codesign is generally defined as end-users’ involvement in planning, implementation, and evaluation of projects. Recently, there has been a growing interest in codesign to maximise research acceptabil...

    Authors: Sara Javanparast, Sally Robinson, Alison Kitson and Joanne Arciuli
    Citation: Research Involvement and Engagement 2022 8:71
  46. Making decisions about your own life is a key aspect of independence, freedom, human rights and social justice. There are disabled people who, without support, would be assessed as incapable of making certain ...

    Authors: Paul Webb, David Falls, Fionnuala Keenan, Barbara Norris, Aine Owens, Gavin Davidson, Rosalie Edge, Berni Kelly, Aisling McLaughlin, Lorna Montgomery, Christine Mulvenna and Rebecca Shea Irvine
    Citation: Research Involvement and Engagement 2022 8:70
  47. Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortun...

    Authors: Jason M. Lo Hog Tian, James R. Watson, Megan Deyman, Billy Tran, Paul Kerber, Kajiko Nanami, Deborah Norris, Kim Samson, Lynne Cioppa, Michael Murphy, A. Mcgee, Monisola Ajiboye, Lori A. Chambers, Catherine Worthington and Sean B. Rourke
    Citation: Research Involvement and Engagement 2022 8:69
  48. Lung cancer has one of the highest incidence and mortality rates worldwide. Physical activity can provide those diagnosed with lung cancer with several physical and psychological benefits. However, the examina...

    Authors: Jordan Curry, Helen Roberts, Alan Smith, Diane Riley, Mark Pearson and Cynthia C. Forbes
    Citation: Research Involvement and Engagement 2022 8:66

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