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  1. Children and adolescents have the right to participate in decisions concerning their health and express their views, also regarding hospital experiences. Patient-reported experience measures (PREMs) are valuab...

    Authors: Jane Hybschmann, Jette Led Sørensen, Jakob Thestrup, Helle Pappot, Kirsten Arntz Boisen, Thomas Leth Frandsen and Line Klingen Gjærde
    Citation: Research Involvement and Engagement 2024 10:49
  2. There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. H...

    Authors: Olivia R. Phillips, Cerian Harries, Jo Leonardi-Bee, Holly Knight, Lauren B. Sherar, Veronica Varela-Mato and Joanne R. Morling
    Citation: Research Involvement and Engagement 2024 10:48
  3. As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supp...

    Authors: Cloe Benz, Will Scott-Jeffs, K. A. McKercher, Mai Welsh, Richard Norman, Delia Hendrie, Matthew Locantro and Suzanne Robinson
    Citation: Research Involvement and Engagement 2024 10:47
  4. Although including public contributors as members of research teams is becoming common, there are few reflections on how they have been incorporated, and almost none of these reflections are co-produced with p...

    Authors: Alice Moult, Ali Aries, Paul Bailey and Zoe Paskins
    Citation: Research Involvement and Engagement 2024 10:46
  5. This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriente...

    Authors: Sandy Rao, Gina Dimitropoulos, Rae Jardine, Julien Quickstad, Laetitia Satam, Mohammad Qureshi, Thyra Bui, Antoaneta Alexandrova Todorova, Ysabelle Tumaneng, Abitha Suthakaran, Kaiden Dalley, Stacie Smith and Scott B. Patten
    Citation: Research Involvement and Engagement 2024 10:45
  6. While there has been a long recognition of the importance of race equality in health and care research, there is a lack of sustained action among research funding and research performing organisations to addre...

    Authors: David Faluyi, Pavel V. Ovseiko, Krysia Dziedzic and Fay Scott
    Citation: Research Involvement and Engagement 2024 10:44
  7. This study was initiated and co-designed by a Participant and Public Involvement (PPI) group attached to HOMESIDE, a randomized controlled trial that investigated music and reading interventions for people liv...

    Authors: Jodie Bloska, Sarah Crabtree, Nina Wollersberger, Oti Mitchell, Jenny Coles, Caroline Halsey, Geraldine Parry, Robert Stewart, Susan Thacker, Mark Thacker, Leica Claydon-Mueller, Yvette Winnard, Kate McMahon, Carina Petrowitz, Agnieszka Smrokowska-Reichmann, Beatrix van Doorn…
    Citation: Research Involvement and Engagement 2024 10:43
  8. Participatory research approaches systematically integrate the perspectives of individuals, organizations, or communities that have a direct interest in a study’s processes and outcomes (i.e., stakeholders) in...

    Authors: Anna Maria Chudyk, Sasha Kullman, Donna Pool, Todd Ashley Duhamel, Maureen Ashe and Shaelyn Strachan
    Citation: Research Involvement and Engagement 2024 10:42
  9. Co-production of research with communities and stakeholders is recognised as best practice, but despite this, transparent reporting and reflective accounts on co-producing research is lacking. Born in Bradford...

    Authors: David Ryan, Hannah Nutting, Chloe Parekh, Suzie Crookes, Lauren Southgate, Kenzie Caines, Phoebe Dear, Abel John, Muhammed Adnan Rehman, Dawn Davidson, Usayd Abid, Lewis Davidson, Katy A. Shire and Rosemary R. C. McEachan
    Citation: Research Involvement and Engagement 2024 10:41
  10. Research study participants can stop taking part early, in various circumstances. Sometimes this experience can be stressful. Providing participants with the information they want or need when they stop could ...

    Authors: William J. Cragg, Liam Bishop, Rachael Gilberts, Michael Gregg, Terry Lowdon, Mary Mancini, Clara Martins de Barros and Pete Wheatstone
    Citation: Research Involvement and Engagement 2024 10:39
  11. ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healt...

    Authors: Kate Hough, Mary Grasmeder, Heather Parsons, William B Jones, Sarah Smith, Chris Satchwell, Ian Hobday, Sarah Taylor and Tracey Newman
    Citation: Research Involvement and Engagement 2024 10:38
  12. Digital storytelling is an arts-informed approach that engages short, first-person videos, typically three to five minutes in length, to communicate a personal narrative. Prior to the pandemic, digital storyte...

    Authors: Elizabeth Mansfield, Nafeesa Jalal, Rani Sanderson, Geeta Shetty, Andrea Hylton and Chelsea D’Silva
    Citation: Research Involvement and Engagement 2024 10:37
  13. Timely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-desi...

    Authors: Sadia Ahmed, Jessica Simon, Patricia Biondo, Vanessa Slobogian, Lisa Shirt, Seema King, Alessandra Paolucci, Aliyah Pabani, Desiree Hao, Emi Bossio, Ralph Cross, Tim Monds, Jane Nieuwenhuis and Aynharan Sinnarajah
    Citation: Research Involvement and Engagement 2024 10:36
  14. Individuals living with chronic advanced cancer (CAC) often face distinct physical, functional, and cognitive issues. Their rehabilitation needs are not yet routinely met, warranting further CAC-specific reha...

    Authors: Naomi Dolgoy, Stephanie Bernard, Fleur Huang, Amy Driga, Debra Hall-Lavoie, Adam Brown, Edith Pituskin, Alysa Fairchild and Margaret L. McNeely
    Citation: Research Involvement and Engagement 2024 10:35
  15. The COVID-19 pandemic exposed long-standing inequities in Canada’s long-term residential care (LTRC) sector with life-threatening consequences. People from marginalized groups are overrepresented among those w...

    Authors: Mary Jean Hande, Prince Owusu, Katie Aubrecht, Denise Cloutier, Carole Estabrooks and Janice Keefe
    Citation: Research Involvement and Engagement 2024 10:34
  16. In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects h...

    Authors: Ellen B. M. Elsman, Maureen Smith, Catherine Hofstetter, Frank Gavin, Estelle Jobson, Sarah Markham, Juanna Ricketts, Ami Baba, Nancy J. Butcher and Martin Offringa
    Citation: Research Involvement and Engagement 2024 10:33
  17. Despite the importance of statistical and numerical aspects in key decisions related to clinical trials and their impact in patient’s care, patient and public involvement remains underdeveloped in this field. ...

    Authors: Beatriz Goulao and Susan Morisson
    Citation: Research Involvement and Engagement 2024 10:32
  18. This project (named Reinvent) aimed to promote Public Involvement (PI) in health research. Academics worked with a community group, the Eloquent Praise & Empowerment Dance Company, to develop a community partn...

    Authors: Alice Moult, Natalie Knight, Nathan Medina, Opeyemi Babatunde, Tom Kingstone, Helen Duffy, Kate Fryer, Krysia Canvin, Laura Swaithes, Lucy Brading, Lucy Bray, Wanda Russell and Krysia Dziedzic
    Citation: Research Involvement and Engagement 2024 10:31
  19. In the context of mental health research, co-production involves people with lived expertise, those with professional or academic expertise, and people with both of these perspectives collaborating to design a...

    Authors: Sophie Soklaridis, Holly Harris, Rowen Shier, Jordana Rovet, Georgia Black, Gail Bellissimo, Sam Gruszecki, Elizabeth Lin and Anna Di Giandomenico
    Citation: Research Involvement and Engagement 2024 10:30
  20. Our comment discusses our experience establishing a youth advisory group focused on chronic disease prevention research. The comment highlights three key learnings: the need for researchers to adapt their work...

    Authors: Stephanie R. Partridge, Mariam Mandoh, Allyson Todd and Rebecca Raeside
    Citation: Research Involvement and Engagement 2024 10:29
  21. Virtual patient engagement has become more common in recent years. Emerging research suggests virtual engagement can increase accessibility for patients managing long-term health conditions and those living in...

    Authors: Kelsey Stefanik-Guizlo, Claire Allen, Sarah Brush, Jessica Mogk, Starette Canada, Marina Peck, Kathryn Ramos, Karen Volpe and Paula Lozano
    Citation: Research Involvement and Engagement 2024 10:28
  22. There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults i...

    Authors: Jessica Bytautas, Alisa Grigorovich, Judith Carson, Janet Fowler, Ian Goldman, Bessie Harris, Anne Kerr, Ashley-Ann Marcotte, Kieran O’Doherty, Amanda Jenkins, Susan Kirkland and Pia Kontos
    Citation: Research Involvement and Engagement 2024 10:27
  23. Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers’ everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Educa...

    Authors: Eleanor Hoverd, Sophie Staniszewska, Jeremy Dale, Rachel Spencer, Anne Devrell, Dena Khan, Carrol Lamouline, Sanya Saleem and Pam Smith
    Citation: Research Involvement and Engagement 2024 10:26
  24. Patient engagement in research is the meaningful and collaborative interaction between patients and researchers throughout the research process. Patient engagement can help to ensure patient-oriented values an...

    Authors: Manoj M. Lalu, Dawn Richards, Madison Foster, Brittany French, Angela M. Crawley, Kirsten M. Fiest, Kathryn Hendrick, Kimberly F. Macala, Asher A. Mendelson, Pat Messner, Stuart G. Nicholls, Justin Presseau, Cheryle A. Séguin, Patrick Sullivan, Bernard Thébaud and Dean A. Fergusson
    Citation: Research Involvement and Engagement 2024 10:25
  25. People with lived experience of health and illness are increasingly being involved in research. Knowing what creates interest in becoming involved in health research may help identify appropriate ways of facil...

    Authors: Toril Beate Røssvoll, Kristin Liabo, Tove Aminda Hanssen, Jan H. Rosenvinge, Elisabeth Sundkvist and Gunn Pettersen
    Citation: Research Involvement and Engagement 2024 10:24
  26. Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include ...

    Authors: Lisa D. Hawke, Faith Rockburne, Melissa Hiebert, Connie Putterman and Natasha Y. Sheikhan
    Citation: Research Involvement and Engagement 2024 10:23
  27. Involvement of individuals with lived experience, also called “patient partners”, is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year imple...

    Authors: Emily Nicholas Angl, Celia Laur, Michael Strange, Barbara Sklar, Mina Tadrous and Noah Ivers
    Citation: Research Involvement and Engagement 2024 10:22
  28. When people who can use or benefit from research findings are engaged as partners on study teams, the quality and impact of findings are better. These people can include patients/consumers and clinicians who d...

    Authors: Krystina B. Lewis, Maureen Smith, Dawn Stacey, Meg Carley and Ian D. Graham
    Citation: Research Involvement and Engagement 2024 10:21
  29. Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research...

    Authors: Grace Gard, Jo Oakley, Kelsey Serena, Karla Gough, Michael Harold, Katya Gray, Helen Anderson, Judi Byrne, Jo Cockwill, Graeme Down, George Kiossoglou and Peter Gibbs
    Citation: Research Involvement and Engagement 2024 10:20
  30. There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need...

    Authors: Sarah Mitchell, Nicola Turner, Kate Fryer, Jude Beng, Margaret E. Ogden, Melanie Watson, Clare Gardiner, Joanne Bayly, Katherine E. Sleeman and Catherine J. Evans
    Citation: Research Involvement and Engagement 2024 10:19
  31. The CHILD-BRIGHT Network, a pan-Canadian childhood disability research Network, is dedicated to patient-oriented research, where numerous stakeholders, including patient-partners, researchers, and clinicians a...

    Authors: Tatiana Ogourtsova, Miriam Gonzalez, Alix Zerbo, Frank Gavin, Keiko Shikako, Jonathan Weiss and Annette Majnemer
    Citation: Research Involvement and Engagement 2024 10:18
  32. While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the My...

    Authors: Linda Nguyen, Kinga Pozniak, Sonya Strohm, Jessica Havens, Claire Dawe-McCord, Donna Thomson, Connie Putterman, Dana Arafeh, Barb Galuppi, Alicia Via-Dufresne Ley, Shelley Doucet, Khush Amaria, Adrienne H. Kovacs, Ariane Marelli, Ronen Rozenblum and Jan Willem Gorter
    Citation: Research Involvement and Engagement 2024 10:17
  33. Co-production of research aims to include people with lived experience of a phenomena throughout the research process. People experiencing homelessness often experience advance ill-health at a young age, yet a...

    Authors: Jodie Crooks, Kate Flemming, Caroline Shulman, Emma Casey and Briony Hudson
    Citation: Research Involvement and Engagement 2024 10:16
  34. Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed...

    Authors: Bella Wheeler, Oli Williams, Becki Meakin, Eleni Chambers, Peter Beresford, Sarah O’Brien and Glenn Robert
    Citation: Research Involvement and Engagement 2024 10:15
  35. In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illnes...

    Authors: Lisa Hartling, Sarah A. Elliott, Annie Mabbott, Julie Leung, Kathleen Shearer, Chrissy Smith and Shannon D. Scott
    Citation: Research Involvement and Engagement 2024 10:14
  36. Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that finding...

    Authors: Amanda Wurz, Kelsey Ellis, Julia Nordlund, Marie-Eve Carrier, Vanessa Cook, Amy Gietzen, Claire Adams, Elsa-Lynn Nassar, Danielle B. Rice, Catherine Fortune, Genevieve Guillot, Tracy Mieszczak, Michelle Richard, Maureen Sauve and Brett D. Thombs
    Citation: Research Involvement and Engagement 2024 10:13
  37. Meaningful community engagement (CE) in HIV prevention research is crucial for successful and ethically robust study implementation. We conducted a qualitative study to understand the current CE practices in H...

    Authors: Venkatesan Chakrapani, Vijayalakshmi Loganathan, Paromita Saha, Devi Leena Bose, Nabeela Khan, Tiara Aurora, Jyoti Narayan, Joyeeta Mukherjee, Saif ul Hadi and Chitrangna Dewan
    Citation: Research Involvement and Engagement 2024 10:12
  38. Lay health advisors (LHAs) are increasingly being used to increase patient and public involvement in research, disseminate health information, and work toward preventing health disparities within communities a...

    Authors: Cyleste C. Collins, Mona Shediac-Rizkallah, Jacqueline Dolata, Erika Hood, Elodie Nonguierma and Daryl Thornton
    Citation: Research Involvement and Engagement 2024 10:11
  39. Involving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder co...

    Authors: Nicole Zhao, Allison M. Cuthel, Owen Storms, Raina Zhang, Rebecca Liddicoat Yamarik, Jacob Hill, Regina Kaur, Kaitlyn Van Allen, Mara Flannery, Alex Chang, Frank Chung, Sumeet Randhawa, Isabel Castro Alvarez, Angela Young-Brinn, Constance L. Kizzie-Gillett, Dawn Rosini…
    Citation: Research Involvement and Engagement 2024 10:10
  40. The Adolescents and Adults Living with Perinatal HIV (AALPHI) study is one of only three cohort studies worldwide evaluating the impact of HIV on young people living with perinatal HIV (PLHIV) relative to a co...

    Authors: Kate Sturgeon, Ali Judd, Tom Burke, Caroline Foster, Diana M. Gibb, Marthe Le Prevost, Warren Mhizha and Conor D. Tweed
    Citation: Research Involvement and Engagement 2024 10:9
  41. Spinal manual therapy and corticosteroid nerve root injection are commonly used to treat patients with lumbar radiculopathy. The SALuBRITY trial—a two parallel group, double sham controlled, randomised clinica...

    Authors: Corina Ryf, Léonie Hofstetter, Lauren Clack and Cesar A. Hincapié
    Citation: Research Involvement and Engagement 2024 10:8
  42. In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, ...

    Authors: Kerry Micklewright, Anne Killett, Gizdem Akdur, Priti Biswas, Pamela Blades, Lisa Irvine, Liz Jones, Julienne Meyer, Natalie Ravenscroft, Hilary Woodhead and Claire Goodman
    Citation: Research Involvement and Engagement 2024 10:7
  43. Society is placing increasing demands on collaboration with actors outside the academia to be involved in the research process, and the responsibility for turning this into reality lies with the researchers. A...

    Authors: Synneve Dahlin-Ivanoff, Isak Berge, Emmelie Barenfeld, Maria Haak and Qarin Lood
    Citation: Research Involvement and Engagement 2024 10:6
  44. Authors: Thomas Morel, Karlin Schroeder, Sophie Cleanthous, John Andrejack, Geraldine Blavat, William Brooks, Lesley Gosden, Carroll Siu, Natasha Ratcliffe and Ashley F. Slagle
    Citation: Research Involvement and Engagement 2024 10:5

    The original article was published in Research Involvement and Engagement 2023 9:98

  45. Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and de...

    Authors: Ellen Stewart and Elizabeth Such
    Citation: Research Involvement and Engagement 2024 10:4
  46. Patient and public involvement in health-related research is a new discipline in Denmark. In 2021, a national conference titled 'Patient and Public Involvement in Complex Intervention Research' provided a foru...

    Authors: Pernille Christiansen Skovlund, Jeanette Finderup, Sanne Aabo, Flemming Jensen, Henning Søndergaard and Lotte Ørneborg Rodkjær
    Citation: Research Involvement and Engagement 2024 10:3
  47. Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acce...

    Authors: Joanne Woodford, Christina Reuther, Johan Lars Ljungberg and Louise von Essen
    Citation: Research Involvement and Engagement 2024 10:2
  48. Engaging individuals living with disease in drug development and regulatory processes leads to more thoughtful and sensitive trial designs, drives more informative and meaningful outcomes from clinical studies...

    Authors: Patricia Furlong, Ashish Dugar and Molly White
    Citation: Research Involvement and Engagement 2024 10:1

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