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  1. Patient and public involvement (PPI) ensures that research is designed and conducted in a manner that is most beneficial to the individuals whom it will impact. It has an undisputed place in applied research a...

    Authors: Lucy Abell, Francesca Maher, Samina Begum, Sarah Booth, Jonathan Broomfield, Sangyu Lee, Ellesha Smith, Rachael Stannard, Lucy Teece, Elpida Vounzoulaki, Hannah Worboys and Laura J. Gray
    Citation: Research Involvement and Engagement 2023 9:100
  2. The quality of Patient and Public Involvement (PPI) in healthcare research varies considerably and is frequently tokenistic. We aimed to co-produce the Insight | Public Involvement Quality Recognition and Awar...

    Authors: Steven Blackburn, Rachele Hine, Samantha Fairbanks, Phillip Parkes, Darren Murinas, Andrew Meakin, Robert Taylor, Linda Parton, Marilyn Jones, Jessica Tunmore, Jennifer Lench, Nicola Evans, Katharine Lewney, Lucy O’Mara and Anthony A. Fryer
    Citation: Research Involvement and Engagement 2023 9:99
  3. In support of UCB pharmaceutical research programs, the aim of this research was to implement a novel process for patient involvement in a multidisciplinary research group to co-create a clinical outcome asses...

    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 2023 9:98

    The Correction to this article has been published in Research Involvement and Engagement 2024 10:5

  4. Participant involvement in research studies is not a new concept, yet barriers to implementation remain and application varies. This is particularly true for pandemic response research studies, where timeframe...

    Authors: Anna Howells, Erika Neves Aquino, Deepika Bose, Martin Gerard Kelly, Barbara Molony-Oates, Asmah Hassan Syed, Kim Tolley, Claire Neill, Susan Hopkins, Victoria Hall and Jasmin Islam
    Citation: Research Involvement and Engagement 2023 9:97
  5. To develop a consumer and community involvement (CCI) strategy for the Women’s Health Research, Translation and Impact Network (WHRTN), an initiative of the Australian Health Research Alliance (AHRA).

    Authors: Rebecca L. Madill, Leslie D. Arnott, Lesley Pascuzzi, Katie Allen, Angela L. Todd, Janette Perz, Helen Bolger-Harris, Gita D. Mishra and Jacqueline A. Boyle
    Citation: Research Involvement and Engagement 2023 9:96
  6. Students experience lower levels of wellbeing than the general, age-matched population. A whole-university approach to mental health is encouraged, which must work for individuals from all backgrounds and expe...

    Authors: Jemima Dooley, Amina Ghezal, Thomas Gilpin, Husna Hassan Basri, Katy Humberstone, Amber Lahdelma, Pranati Misurya, Ellen Marshall and Ed Watkins
    Citation: Research Involvement and Engagement 2023 9:95
  7. Family engagement in research is crucial to generating relevant, impactful, and meaningful priorities and outcomes. Although there has been increased awareness and value for patient-oriented research, most pat...

    Authors: Janet W. T. Mah and Katie Nickerson
    Citation: Research Involvement and Engagement 2023 9:94
  8. Patients and caregivers investigate a wide range of approaches to address the signs and symptoms of their condition. Such investigation could lead to new treatment insights or avenues for research. However, cu...

    Authors: Freya Moxham, Christine Cutaran, Jakub Sadocha and Korey Capozza
    Citation: Research Involvement and Engagement 2023 9:93
  9. Putting patients’ needs and priorities at the forefront of healthcare initiatives and medical product development is critical to achieve outcomes that matter most to patients. This relies on the integration of...

    Authors: Tom Willgoss, Omar A. Escontrias, Carole Scrafton, Elisabeth Oehrlein, Victoria Livingstone, Fiona C. Chaplin, Maddalena Benivento, Hayley Chapman and Nicholas Brooke
    Citation: Research Involvement and Engagement 2023 9:92
  10. Evidence suggests resources and services benefit from being developed in collaboration with the young people they aim to support. Despite this, patient and public involvement and engagement (PPIE) with young p...

    Authors: Bethan Spencer, Siobhan Hugh-Jones, David Cottrell and Simon Pini
    Citation: Research Involvement and Engagement 2023 9:91
  11. Public and Patient Involvement in research is becoming a requirement on most research funding applications; this includes both healthcare and lab-based research. Whilst case studies and practical guides have b...

    Authors: Adele E. Connor, Claire Hughes, Lea Schäfer, Lorraine McNally, Deirdre O’ Raw, Katayoun Bahramian, Bridget Carr, Ingrid Halligan Dunne, Joanne Lysaght, Sharon A. O’ Toole, Jeremy C. Simpson and Antoinette S. Perry
    Citation: Research Involvement and Engagement 2023 9:90
  12. The involvement of adolescents and young adults (AYAs) with lived experience of health and mental health conditions as partners in research is increasing given the prominence of participatory approaches to res...

    Authors: Brooke Allemang, Megan Patton, Katelyn Greer, Karina Pintson, Marcela Farias, Keighley Schofield, Susan Samuel, Scott B. Patten, Kathleen C. Sitter and Gina Dimitropoulos
    Citation: Research Involvement and Engagement 2023 9:89
  13. Pediatric trials are possible through voluntary participation of children, youth (age ≤ 18 years), and their families. Despite important arguments for trialists to provide trial progress or results, and eviden...

    Authors: Ami Baba, Dawn P. Richards, Maureen Smith, Nicole Pallone, Shelley Vanderhout, Matthew Prebeg, Ellen B. M. Elsman, Beth K. Potter, Martin Offringa and Nancy J. Butcher
    Citation: Research Involvement and Engagement 2023 9:88
  14. Promoting wellbeing of persons with dementia and their families is a priority of research and practice. Engaging diverse partners, including persons with dementia and their families, to co-develop intervention...

    Authors: Laura E. Middleton, Shannon Freeman, Chelsea Pelletier, Kayla Regan, Rachael Donnelly, Kelly Skinner, Cindy Wei, Emma Rossnagel, Huda Jamal Nasir, Tracie Albisser, Fatim Ajwani, Sana Aziz, William Heibein, Ann Holmes, Carole Johannesson, Isabella Romano…
    Citation: Research Involvement and Engagement 2023 9:87
  15. As research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly...

    Authors: Michael S. Taccone, Nathalie Baudais, Don Wood, Suzanne Bays, Sasha Frost, Robin Urquhart, Ian D. Graham and Judit Takacs
    Citation: Research Involvement and Engagement 2023 9:86
  16. Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent....

    Authors: Hildert Bronkhorst, Wytske M. van Weerden, Eline M. Bunnik and Hub Zwart
    Citation: Research Involvement and Engagement 2023 9:85
  17. There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research ...

    Authors: Cat Papastavrou Brooks, Eshika Kafle, Natali Butt, Dave Chawner, Anna Day, Chloë Elsby-Pearson, Emily Elson, John Hammond, Penny Herbert, Catherine L. Jenkins, Zach Johnson, Sarah Helen Keith-Roach, Eirini Papasileka, Stella Reeves, Natasha Stewart, Nicola Gilbert…
    Citation: Research Involvement and Engagement 2023 9:84
  18. Increased levels of physical activity are associated with beneficial health effects for people with type 2 diabetes, cardiovascular disease and/or severe obesity; however, transforming knowledge about these ef...

    Authors: Anders Blædel Gottlieb Hansen, Marie Lønberg Hansen, Sanja Golubovic, Paul Bloch, Janne Kunchel Lorenzen, Thomas Peter Almdal, Mathias Ried-Larsen and Ida Kær Thorsen
    Citation: Research Involvement and Engagement 2023 9:83
  19. Approximately one in ten children globally live with kinship caregivers—relatives and family friends who step in to care for a child when parents are unable to do so. When families take on the role of informal...

    Authors: Erika Moldow, Virgie M. Anderson, Stephanie LaShay Benjamin, Barbara Patricia Johnson, Elizabeth McGuan, Donna Xenakis, Alexandra Piñeros Shields and Yanfeng Xu
    Citation: Research Involvement and Engagement 2023 9:82
  20. Posed 16 years ago in a much-cited editorial by gerontologist, Alan Walker, “Why involve older people in research?” is a question that has since inspired researchers in many countries and from diverse discipli...

    Authors: Sara Hultqvist, Elizabeth Hanson, Håkan Jönson, Björn Slaug and Susanne Iwarsson
    Citation: Research Involvement and Engagement 2023 9:81
  21. Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering no...

    Authors: Grace Fox, Manoj M. Lalu, Tara Sabloff, Stuart G. Nicholls, Maureen Smith, Dawn Stacey, Faris Almoli and Dean A. Fergusson
    Citation: Research Involvement and Engagement 2023 9:80
  22. While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts...

    Authors: Eppie Leishman, Deborah Quilgars, David Abbott, Sam Clark, Becca Cooper, Andy Pollin, Stephen Hodgkins and Paul Scarrott
    Citation: Research Involvement and Engagement 2023 9:79
  23. The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how ...

    Authors: Sakiko Yamaguchi, Carrie Costello, Corinne Lalonde, Sharon McCarry, Annette Majnemer and Keiko Shikako
    Citation: Research Involvement and Engagement 2023 9:78
  24. Recovery Colleges (RCs) are mental health and well-being education centres where people come together and learn skills that support their wellness. Co-production, co-learning and transformative education are f...

    Authors: Holly Harris, Rowen Shier, Georgia Black, Anna Di Giandomenico, Elizabeth Lin, Gail Bellissimo, Jordana Rovet, Sam Gruszecki and Sophie Soklaridis
    Citation: Research Involvement and Engagement 2023 9:77
  25. Racially marginalised groups are underserved in healthcare and underrepresented in health research. Patient and public involvement and engagement (PPIE) is established as the method to ensure equity in health ...

    Authors: Catherine Jameson, Zehra Haq, Samira Musse, Zahra Kosar, Gloria Watson and Vikki Wylde
    Citation: Research Involvement and Engagement 2023 9:76
  26. Researchers often use terminology to define their participant groups that is rooted in a clinical understanding of the group’s shared identity(ies). Such naming often ignores the ways that the individuals who ...

    Authors: Kyle Rubini, Taim Al-Bakri, William Bridel, Andrew Clapperton, Mark Greaves, Nolan E. Hill, Max Labrecque, Richard MacDonagh, Glenndl Miguel, Shane Orvis, Will Osbourne-Sorrell, Taylor Randall, Marco Reid, Andrew Rosser, Justin Presseau and Elisabeth Vesnaver
    Citation: Research Involvement and Engagement 2023 9:75
  27. Patient and Public Involvement (PPI) in aphasia research requires researchers to include people with aphasia as research partners from the beginning of the study. Yet the quality of reporting on the level and ...

    Authors: Marina Charalambous, Alexia Kountouri, Jürg Rainer Schwyter, Jean-Marie Annoni and Maria Kambanaros
    Citation: Research Involvement and Engagement 2023 9:74
  28. The Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An impo...

    Authors: Laura Tripp, Dawn P. Richards, Jennifer Daly-Cyr, Therese Lane, Delane Linkiewich, Kimberly N. Begley, Norman Buckley, Maria Hudspith, Patricia Poulin and Julia Abelson
    Citation: Research Involvement and Engagement 2023 9:73
  29. Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic hea...

    Authors: Kristine Elberg Dengsø, Sofie Tscherning Lindholm, Suzanne Forsyth Herling, Maja Pedersen, Kristina Holmegaard Nørskov, Marie Oxenbøll Collet, Iben Husted Nielsen, Mille Guldager Christiansen, Mette Schaufuss Engedal, Helga Wallin Moen, Karin Piil, Ingrid Egerod, Mogens Hørder and Mary Jarden
    Citation: Research Involvement and Engagement 2023 9:72
  30. In the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service deli...

    Authors: Nicola F. Hughes, Lorna A. Fern, Angela Polanco, Chris Carrigan, Richard G. Feltbower, Ashley Gamble, Emily Connearn, Angela Lopez, Ellen Bisci and Kathy Pritchard-Jones
    Citation: Research Involvement and Engagement 2023 9:71
  31. The evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patien...

    Authors: Holly Etchegary, Stefanie Linklater, D.’Arcy Duquette, Gloria Wilkinson, Vanessa Francis, Erin Gionet, Andrea M. Patey and Jeremy M. Grimshaw
    Citation: Research Involvement and Engagement 2023 9:70
  32. To investigate and describe the process of using experience-based co-design (EBCD) to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation.

    Authors: Mille Nabsen Marwaa, Susanne Guidetti, Charlotte Ytterberg and Hanne Kaae Kristensen
    Citation: Research Involvement and Engagement 2023 9:69
  33. The growth of data science and artificial intelligence offers novel healthcare applications and research possibilities. Patients should be able to make informed choices about using healthcare. Therefore, they ...

    Authors: Piotr Teodorowski, Kelly Gleason, Jonathan J. Gregory, Martha Martin, Reshma Punjabi, Suzanne Steer, Serdar Savasir, Pournamy Vema, Kabelo Murray, Helen Ward and Dorota Chapko
    Citation: Research Involvement and Engagement 2023 9:67
  34. Although medical research dissemination is intended to benefit members of society, few members of society actually participate in the process of publishing findings. This study shares findings from community m...

    Authors: Cyleste C. Collins, Erika Hood, Jeri Jewett-Tennant, Kurt Stange and Ashwini R. Sehgal
    Citation: Research Involvement and Engagement 2023 9:66
  35. Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population...

    Authors: Caroline Elfassy, Lisa Wagner, Johanne Higgins, Kathleen Montpetit, Laurie Snider and Noémi Dahan-Oliel
    Citation: Research Involvement and Engagement 2023 9:64
  36. People who use drugs (PWUD) have difficulty participating in clinical research. We evaluated approaches to engage PWUD in clinical research, using facilitated telemedicine for hepatitis C virus (HCV) care as a...

    Authors: Andrew H. Talal, Saliyah J. George, Lillian A. Talal, Arpan Dharia, Ana Ventuneac, Gloria Baciewicz, Ponni V. Perumalswami and Suzanne S. Dickerson
    Citation: Research Involvement and Engagement 2023 9:63
  37. In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research...

    Authors: Stella Babatunde, Sadia Ahmed, Maria Jose Santana, Ingrid Nielssen, Sandra Zelinsky and Anshula Ambasta
    Citation: Research Involvement and Engagement 2023 9:62
  38. The active involvement of patients and the public in the design and delivery of health research has been increasingly encouraged, if not enforced. Knowledge of how this is realised in practice, especially wher...

    Authors: Jennifer Preston, Giovanni Biglino, Victoria Harbottle, Emma Dalrymple, Helen Stalford and Michael W. Beresford
    Citation: Research Involvement and Engagement 2023 9:61
  39. Over the last decade there has been considerable research into the treatment, management, and quality of life of people living with multiple myeloma. However, there has been limited investigation into topics d...

    Authors: Sarah Bridges, Samantha Fowler, Lauren McLaughlin, Marc Robichaud, Barbara Ridgway, Donna Reece, Kevin Song, Lorelei Dalrymple, Robin Sully, Sharon Nason, Suzanne Rowland, Trish MacDonald, William Paine, Adrienne Gulliver and Anthony Reiman
    Citation: Research Involvement and Engagement 2023 9:60
  40. In Australia, Aboriginal and Torres Strait Islander (Indigenous) families have strong, cohesive, and nurturing cultural practices that contribute to effective family functioning and child rearing. These practi...

    Authors: Luciana Massi, Loretta Weatherall, Christine Nielsen, Maree Toombs, Bronwyn Fredericks and Kym M. Rae
    Citation: Research Involvement and Engagement 2023 9:59
  41. It is becoming more common for parents of children with chronic conditions to join research teams as partners. Parent partnerships can help align research with what is relevant and important to families. It is...

    Authors: Laesa Kim, Carrie Costello, Michael A. Golding, Chloé Janse van Rensburg, Jennifer L. P. Protudjer and Kristy Wittmeier
    Citation: Research Involvement and Engagement 2023 9:58
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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

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