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  1. Although underserved populations— including those from ethnic minority communities and those living in poverty—have worse health and poorer healthcare experiences, most primary care research does not fairly re...

    Authors: Kate Fryer, Isobel Hutt, Habiba Aminu, Emma Linton, Johanna White, Josie Reynolds and Caroline Mitchell
    Citation: Research Involvement and Engagement 2024 10:69
  2. Public involvement and engagement (PI&E) is increasingly recognised as an important component of research. It can offer valuable insights from those with experiential knowledge to improve research quality, rel...

    Authors: Lauren Cross, Dale Banham, G. J. Melendez-Torres, Tamsin Ford, Esther van Sluijs and Kristin Liabo
    Citation: Research Involvement and Engagement 2024 10:68
  3. Clustering and co-occurring of family adversities, including mental health problems, substance use, domestic violence and abuse, as well as poverty can increase health and behavioural risks for children, which...

    Authors: Cassey Muir, Sophie G. E. Kedzior, Simon Barrett, Ruth McGovern, Eileen Kaner, Ingrid Wolfe and Julia R. Forman
    Citation: Research Involvement and Engagement 2024 10:67
  4. Lived experience researchers draw on their lived and living experiences to either lead on or inform research. Their personal experiences are relevant to the research topic and so they must manage the interplay...

    Authors: Veenu Gupta, Catrin Eames, Alison Bryant, Beth Greenhill, Laura Golding, Jennifer Day and Peter Fisher
    Citation: Research Involvement and Engagement 2024 10:66
  5. Public involvement is important to the relevance and impact of health and care research, as well as supporting the democratisation of research. In 2020, the National Institute for Health Research (NIHR) reorga...

    Authors: Marisha Emily Palm, David Evans, Sophie Staniszewska, Louca-Mai Brady, Bec Hanley, Kate Sainsbury, Derek Stewart and Paula Wray
    Citation: Research Involvement and Engagement 2024 10:65
  6. Discharge communication is essential to convey information regarding the care provided and follow-up plans after a visit to a hospital emergency department (ED), but it can be lacking for visits for pediatric ...

    Authors: Amber Z. Ali, Bruce Wright, Janet A. Curran, Joelle Fawcett-Arsenault and Amanda S. Newton
    Citation: Research Involvement and Engagement 2024 10:64
  7. In light of the FDA’s Project Optimus initiative, there is fresh interest in leveraging Patient-reported Outcome (PRO) data to enhance the assessment of tolerability for investigational therapies within early ...

    Authors: Emily Alger, Mary Van Zyl, Olalekan Lee Aiyegbusi, Dave Chuter, Lizzie Dean, Anna Minchom and Christina Yap
    Citation: Research Involvement and Engagement 2024 10:63
  8. Background: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. One such example is the problem of arm and hand, or upper limb function in multip...

    Authors: Alison Thomson, Rachel Horne, Christine Chapman, Trishna Bharadia, Patrick Burke, Elizabeth Colwell, Mark Harrington, Bonnie Boskovic, Andrea Stennett, David Baker, Gavin Giovannoni and Klaus Schmierer
    Citation: Research Involvement and Engagement 2024 10:62
  9. Clinical trials that are patient-centered appear to be more successful (e.g., clinical outcomes, improved communication, mutual empowerment, changed attitudes), thus, action research may be a field of importan...

    Authors: Sara Santarossa, Michele Baber, Janine Hussein, Chrystal Oley, Kristen Slangerup, Dana Murphy and Karen E. Kippen
    Citation: Research Involvement and Engagement 2024 10:61
  10. Rather than being perceived as merely ‘part of the problem’, the perspectives and experiences of young people play a pivotal role in devising effective solutions for mental health challenges. Two distinct meth...

    Authors: Josimar Antônio de Alcântara Mendes, Mathijs Lucassen, Alex Adams, Lucy Martin, Christine Aicardi, Rebecca Woodcock, Emma Nielsen, Ellen Townsend and Marina Jirotka
    Citation: Research Involvement and Engagement 2024 10:60
  11. Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the...

    Authors: Merel Engelaar, Nanne Bos, Femke van Schelven, Nora Lorenzo i Sunyer, Norbert Couespel, Giovanni Apolone, Cinzia Brunelli, Augusto Caraceni, Montse Ferrer, Mogens Groenvold, Stein Kaasa, Gennaro Ciliberto, Claudio Lombardo, Ricardo Pietrobon, Gabriella Pravettoni, Aude Sirven…
    Citation: Research Involvement and Engagement 2024 10:59
  12. Engagement of patients and the public in health research is crucial for ensuring research relevance and alignment with community needs. However, there is a lack of nuanced evaluations and examples that promote...

    Authors: Marfy Abousifein, A. Tina Falbo, Joyce Luyckx, Julia Abelson, Rebecca Ganann, Brenda Vrkljan and Soo Chan Carusone
    Citation: Research Involvement and Engagement 2024 10:58
  13. Undertaking Patient and Public Involvement (PPI) when developing health and social care research grant applications is critical. However, researchers may not have any funding to undertake PPI when developing g...

    Authors: Alexis Foster, Sharon Caunt, Holly Schofield, Karen Glerum–Brooks, Samina Begum, Phil Gleeson, Graham Prestwich and Wendy Baird
    Citation: Research Involvement and Engagement 2024 10:57
  14. Engaging young people in research is a promising approach to tackling issues like chronic disease prevention. Our involvement as youth advisors provided valuable experiences, including being at the forefront o...

    Authors: Dominik Mautner, Radhika Valanju, Imeelya Al Hadaya, Meera Barani, Alexi Cross, Emily McMahon, Bowen Ren, Dominique Rose, Aviral Sharda, Alexander Sinnett, Fulin Yan and Sara Wardak
    Citation: Research Involvement and Engagement 2024 10:56
  15. When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR)...

    Authors: Sylvia Määttä, Christina Petersson, Boel Andersson Gäre, Göran Henriks, Henrik Ånfors, Christin Lundberg and Ylva Nilsagård
    Citation: Research Involvement and Engagement 2024 10:55
  16. Scientific publications featuring patient-driven innovations (i.e., innovations that are developed and driven by patients or informal caregivers) are increasing. By understanding patient innovators’ experience...

    Authors: Marie Dahlberg, Jamie Linnea Luckhaus, Henna Hasson, Hanna Jansson, Madelen Lek, Carl Savage, Sara Riggare and Carolina Wannheden
    Citation: Research Involvement and Engagement 2024 10:54
  17. The Lost Mothers Project researches the repercussions of mandatory separation between newborns and women in the Criminal Justice System (CJS), aiming to address gaps in evidence and decision-making for pregnan...

    Authors: Laura Abbott, Kate Chivers and Tuesdae Moncrieffe
    Citation: Research Involvement and Engagement 2024 10:53
  18. There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framewor...

    Authors: Marcia Bruce, Karthika Yogaratnam, Nitya Suryaprakash, Karis L. Barker and Deborah A. Marshall
    Citation: Research Involvement and Engagement 2024 10:52
  19. Despite increased focus on adolescence, young people’s voices are often undervalued and underrepresented in health inequalities research and policy. Through exploring young people’s priorities for their health...

    Authors: Laura Tinner
    Citation: Research Involvement and Engagement 2024 10:51
  20. Involving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders i...

    Authors: Claire Nollett, Matthias Eberl, Jim Fitzgibbon, Natalie Joseph-Williams and Sarah Hatch
    Citation: Research Involvement and Engagement 2024 10:50
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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

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