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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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

  32. 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
  33. 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
  34. 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
  35. 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
  36. Lay summaries (LSs) of scientific evidence are critical to sharing research with non-specialist audiences. This scoping review with a consultation exercise aimed to (1) Describe features of the available LS re...

    Authors: Sareh Zarshenas, JoAnne Mosel, Adora Chui, Samantha Seaton, Hardeep Singh, Sandra Moroz, Tayaba Khan, Sherrie Logan and Heather Colquhoun
    Citation: Research Involvement and Engagement 2023 9:121
  37. Evaluation of patient engagement practices are frequently researcher-driven, researcher-funded, and asymmetric in power dynamics. Little to no literature on patient experiences in patient engagement exist that...

    Authors: Brianna Dunstan, Francine Buchanan, Alies Maybee, Aisha Lofters and Ambreen Sayani
    Citation: Research Involvement and Engagement 2023 9:119
  38. The involvement of patients and the public in research is now an expectation in research with funders requesting a clear plan of involvement and engagement. In the United Kingdom involvement typically focuses ...

    Authors: Nicola L. Harman, Kerrie McGiveron, Catrin Tudur Smith, Paula R. Williamson and Heather Barrington
    Citation: Research Involvement and Engagement 2023 9:118
  39. There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, ...

    Authors: Ghilamichael Andemeskel, Nynikka R. Palmer, Rena Pasick, Erin L. Van Blarigan, Stacey A. Kenfield, Rebecca E. Graff, Michael Shaw, Wil Yu, Mayte Sanchez, Roberto Hernandez, Samuel L. Washington III, Salma Shariff-Marco, Kim F. Rhoads and June M. Chan
    Citation: Research Involvement and Engagement 2023 9:117
  40. Increasingly researchers are partnering with citizens and communities in research; less is known about research impacts of this engagement. EMBOLDEN is an evidence-informed, mobility-promoting intervention for...

    Authors: Maggie MacNeil, Julia Abelson, Caroline Moore, Shazelle Lindsay, Janet Adams, Aref Alshaikhahmed, Kamal Jain, Penelope Petrie and Rebecca Ganann
    Citation: Research Involvement and Engagement 2023 9:116
  41. Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvemen...

    Authors: Mille Guldager Christiansen, Helle Pappot, Clayon Hamilton, Trine Lund-Jacobsen, Anne Wilhøft Kristensen, Sara Nordentoft, Beverley Lim Høeg, Pernille Bidstrup, Iben Husted Nielsen, Jane Ulstrup, Anouk Kirsten Trip, Mary Jarden and Karin Piil
    Citation: Research Involvement and Engagement 2023 9:115
  42. Adolescents are navigating a period of rapid growth and development within an era of digitalization. Mobile phone ownership among adolescents is nearly ubiquitous, and this provides an opportunity to harness t...

    Authors: Rebecca Raeside, Allyson Todd, Sara Wardak, Lauren Gardner, Katrina E. Champion, Melissa Kang, Seema Mihrshahi, Katharine Steinbeck, Julie Redfern and Stephanie R. Partridge
    Citation: Research Involvement and Engagement 2023 9:114
  43. Co-produced research is when all stakeholders, including experts by experience and researchers, work together to conceptualise, design, deliver and disseminate research to enhance understanding and knowledge. ...

    Authors: Vasiliki Papageorgiou, Lindsay H. Dewa, Jane Bruton, Keitumetse-Kabelo Murray, Nick Hewlett, Wezi Thamm, Husseina Hamza, Pino Frumiento, Robyn Steward, Melissa Bradshaw, Ellie Brooks-Hall, Silvia Petretti, Sarah Ewans, Mark Williams and Dorota Chapko
    Citation: Research Involvement and Engagement 2023 9:113
  44. The use of participatory research approaches in the field of dementia and forensic mental health research has been on the rise. Advisory board structures, involving people with lived experience (PWLE), have fr...

    Authors: Fenia Ferra, Eva Drewelow, Olga Klein, Marcel Daum, Peggy Walde, Kai Gerullis, Ingo Kilimann, Jack Tomlin, Stefan Teipel and Birgit Völlm
    Citation: Research Involvement and Engagement 2023 9:112
  45. Creative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to d...

    Authors: Alice Malpass, Astrid Breel, Jo Stubbs, Tassos Stevens, Persis-Jadé Maravala, Ellie Shipman, Zoe Banks Gross and Michelle Farr
    Citation: Research Involvement and Engagement 2023 9:111
  46. Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children’s Cancer Pri...

    Authors: Susie Aldiss, Penelope Hart-Spencer, Loveday Langton, Sonia Malik, Keeley McEvoy, Jessica E. Morgan, Rosa Reed-Berendt, Rachel Hollis, Bob Phillips and Faith Gibson
    Citation: Research Involvement and Engagement 2023 9:110
  47. Within the United Kingdom (UK), the National Institute for Health and Care Research is the largest funder of health and social care research, and additionally funds research centres that support the developmen...

    Authors: Alice Moult, Dereth Baker, Ali Aries, Paul Bailey, Steven Blackburn, Tom Kingstone, Saumu Lwembe and Zoe Paskins
    Citation: Research Involvement and Engagement 2023 9:109
  48. Although stakeholder involvement in policymaking is attracting attention in the fields of medicine and healthcare, a practical methodology has not yet been established. Rare-disease policy, specifically resear...

    Authors: Atsushi Kogetsu, Moeko Isono, Tatsuki Aikyo, Junichi Furuta, Dai Goto, Nao Hamakawa, Michihiro Hide, Risa Hori, Noriko Ikeda, Keiko Inoi, Naomi Kawagoe, Tomoya Kubota, Shirou Manabe, Yasushi Matsumura, Koji Matsuyama, Tomoko Nakai…
    Citation: Research Involvement and Engagement 2023 9:107

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