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  1. Involving consumers and community members in the research process is an important step towards developing and delivering effective, person-centered health care. The National Health and Medical Research Council...

    Authors: Tilini Gunatillake, Cade Shadbolt, Daniel Gould, Michelle Lam, Marion Glanville Hearst, Carol Vleeskens, Peter Choong and Michelle Dowsey

    Citation: Research Involvement and Engagement 2020 6:64

    Content type: Protocol

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  2. As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to...

    Authors: Jill Russell, Nina Fudge and Trish Greenhalgh

    Citation: Research Involvement and Engagement 2020 6:63

    Content type: Commentary

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  3. Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well a...

    Authors: S. Gregory, E. M. Bunnik, A. B. Callado, I. Carrie, C. De Boer, J. Duffus, K. Fauria, S. Forster, D. Gove, I. Knezevic, A. Laquidain, D. Pennetier, S. Saunders, S. Sparks, J. Rice, C. W. Ritchie…

    Citation: Research Involvement and Engagement 2020 6:62

    Content type: Research article

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  4. Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the devel...

    Authors: Madison Foster, Dean A Fergusson, Terry Hawrysh, Justin Presseau, Natasha Kekre, Stuart Schwartz, Gisell Castillo, Sarah Asad, Grace Fox, Harold Atkins, Kednapa Thavorn, Joshua Montroy, Robert A Holt, Zarah Monfaredi and Manoj M Lalu

    Citation: Research Involvement and Engagement 2020 6:61

    Content type: Research article

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  5. There is growing interest in patient and stakeholder engagement in research, yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patien...

    Authors: Andrea Heckert, Laura P. Forsythe, Kristin L. Carman, Lori Frank, Rachel Hemphill, Emily A. Elstad, Laura Esmail and Julie Kennedy Lesch

    Citation: Research Involvement and Engagement 2020 6:60

    Content type: Research article

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  6. Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about t...

    Authors: Caroline Jose, Patricia George-Zwicker, Louise Tardif, Aaron Bouma, Darlene Pugsley, Luke Pugsley, Mathieu Bélanger, Jeffrey Gaudet and Marc Robichaud

    Citation: Research Involvement and Engagement 2020 6:58

    Content type: Research article

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  7. Maternal and newborn deaths and ill health are relatively common in low income countries, but can adequately be addressed through locally, collaboratively designed, and responsive research. This has the potent...

    Authors: James Ditai, Monicah Nakyazze, Deborah Andrinar Namutebi, Proscovia Auma, Martin Chebet, Cynthia Nalumansi, Grace Martha Nabulo, Kenneth Mugabe, Toto Anne Gronlund, Anthony Mbonye and Andrew D. Weeks

    Citation: Research Involvement and Engagement 2020 6:57

    Content type: Protocol

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  8. Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the impo...

    Authors:

    Citation: Research Involvement and Engagement 2020 6:56

    Content type: Research article

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  9. The Wales Cancer Research Centre (WCRC) was established in 2015. It made an early and strong commitment to Public and Patient Involvement (PPI) in all its work. That commitment was made manifest through the im...

    Authors: Jim Fitzgibbon, Kate Cleary and Annmarie Nelson

    Citation: Research Involvement and Engagement 2020 6:55

    Content type: Commentary

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  10. Patient engagement could improve the quality of primary care practices. However, we know little about effective patient engagement strategies. We aimed to assess the acceptability and feasibility of embedding ...

    Authors: Julie Haesebaert, Isabelle Samson, Hélène Lee-Gosselin, Sabrina Guay-Bélanger, Jean-François Proteau, Guy Drouin, Chantal Guimont, Luc Vigneault, Annie Poirier, Priscille-Nice Sanon, Geneviève Roch, Marie-Ève Poitras, Annie LeBlanc and France Légaré

    Citation: Research Involvement and Engagement 2020 6:54

    Content type: Research article

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  11. Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public inv...

    Authors: Sally Crowe, Ade Adebajo, Hothan Esmael, Simon Denegri, Angela Martin, Bob McAlister, Barbara Moore, Martin Quinn, Una Rennard, Julie Simpson, Paula Wray and Philippa Yeeles

    Citation: Research Involvement and Engagement 2020 6:53

    Content type: Commentary

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  12. The expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from ...

    Authors: Claire Ludwig, Ian D. Graham, Wendy Gifford, Josee Lavoie and Dawn Stacey

    Citation: Research Involvement and Engagement 2020 6:52

    Content type: Review article

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  13. The use of new technologies and methodologies in young people’s mental health research is needed to allow more frequent and reliable sampling. Mobile applications and e-platforms create exciting potential for ...

    Authors: Claire Grant, Emily Widnall, Lauren Cross, Emily Simonoff and Johnny Downs

    Citation: Research Involvement and Engagement 2020 6:51

    Content type: Research article

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  14. In France, following the passing of a 2002 law, service user representatives (SURs) are part of hospital committees in charge of care quality and safety issues. Ten service user representatives (SURs) were rec...

    Authors: O. Gross, N. Garabedian, C. Richard, M. Citrini, T. Sannié and R. Gagnayre

    Citation: Research Involvement and Engagement 2020 6:50

    Content type: Research article

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  15. Clinical trials remain the cornerstone of improving outcomes for HIV-infected individuals with cryptococcal meningitis. Community engagement aims at involving participants and their advocates as partners in re...

    Authors: Richard Kwizera, Alisat Sadiq, Jane Frances Ndyetukira, Elizabeth Nalintya, Darlisha Williams, Joshua Rhein, David R. Boulware and David B. Meya

    Citation: Research Involvement and Engagement 2020 6:49

    Content type: Commentary

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  16. BRIGHTLIGHT is a national evaluation of cancer services for young people aged 13–24 years in England. It is a mixed methods study with six interlinked studies aiming to answer the question: do specialist cance...

    Authors: Rachel M. Taylor, Brian Lobel, Keisha Thompson, Adura Onashile, Mark Croasdale, Nathaniel Hall, Faith Gibson, Ana Martins, David Wright, Sue Morgan, Jeremy S. Whelan and Lorna A. Fern

    Citation: Research Involvement and Engagement 2020 6:48

    Content type: Commentary

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  17. The goal of the Global Health in Preconception, Pregnancy and Postpartum (HiPPP) Alliance, comprising consumers and leading international multidisciplinary academics and clinicians, is to generate research and...

    Authors: Heidi J. Bergmeier, Virginia Vandall-Walker, Magdalena Skrybant, Helena J. Teede, Cate Bailey, Jo-Anna B. Baxter, Ana Luiza Vilela Borges, Jacqueline A. Boyle, Ayesha Everitt, Cheryce L. Harrison, Margely Herrera, Briony Hill, Brian Jack, Samuel Jones, Laura Jorgensen, Siew Lim…

    Citation: Research Involvement and Engagement 2020 6:47

    Content type: Research article

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  18. The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and...

    Authors: Éidín Ní Shé, Jennifer Cassidy, Carmel Davies, Aoife De Brún, Sarah Donnelly, Emma Dorris, Nikki Dunne, Karen Egan, Michel Foley, Mary Galvin, Mary Harkin, Martha Killilea, Thilo Kroll, Vanessa Lacey, Veronica Lambert, Sarah McLoughlin…

    Citation: Research Involvement and Engagement 2020 6:46

    Content type: Research article

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  19. There is a need to develop innovative solutions to enhance safe and green physical environments, which optimise health, wellbeing and community participation among older adults. To develop solutions that meet ...

    Authors: Anna L. Hatton, Catherine Haslam, Sarah Bell, Joe Langley, Ryan Woolrych, Corrina Cory, James M. W. Brownjohn and Victoria A. Goodwin

    Citation: Research Involvement and Engagement 2020 6:45

    Content type: Research article

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  20. Patient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not ref...

    Authors: Marie-Claude Tremblay, Maude Bradette-Laplante, Danielle Bérubé, Élaine Brière, Nicole Moisan, Daniel Niquay, Maman-Joyce Dogba, France Légaré, Alex McComber, Jonathan McGavock and Holly O. Witteman

    Citation: Research Involvement and Engagement 2020 6:44

    Content type: Research article

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  21. The interest in patient and public involvement (PPI) in health research is increasing. However, the experience and knowledge of PPI throughout the entire research process and especially in the analysis are lim...

    Authors: Pernille Christiansen Skovlund, Berit Kjærside Nielsen, Henriette Vind Thaysen, Henrik Schmidt, Arnstein Finset, Kristian Ahm Hansen and Kirsten Lomborg

    Citation: Research Involvement and Engagement 2020 6:43

    Content type: Research article

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  22. Critical stakeholder-identified gaps in current health research engagement strategies include the exclusion of voices traditionally less heard and a lack of consideration for the role of trauma in lived experi...

    Authors: P. Roche, C. Shimmin, S. Hickes, M. Khan, O. Sherzoi, E. Wicklund, J. G. Lavoie, S. Hardie, K. D. M. Wittmeier and K. M. Sibley

    Citation: Research Involvement and Engagement 2020 6:42

    Content type: Research article

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  23. The James Lind Alliance (JLA) supports priority setting partnerships (PSPs) in which patients, carers and health professionals collaborate to identify a Top 10 list of research priorities. Few studies have exa...

    Authors: Kristina Staley, Sally Crowe, Joanna C. Crocker, Mary Madden and Trisha Greenhalgh

    Citation: Research Involvement and Engagement 2020 6:41

    Content type: Research article

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  24. Health research in the UK requires patients, those with lived experience and members of the public to be involved in designing and shaping research: many of them have reported that their comments and suggestio...

    Authors: Elspeth Mathie, Nigel Smeeton, Diane Munday, Graham Rhodes, Helena Wythe and Julia Jones

    Citation: Research Involvement and Engagement 2020 6:40

    Content type: Research article

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  25. Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health resea...

    Authors: Lidewij Eva Vat, Mike Warren, Susan Goold, Everard (Bud) Davidge, Nicole Porter, Tjerk Jan Schuitmaker-Warnaar, Jacqueline E. W. Broerse and Holly Etchegary

    Citation: Research Involvement and Engagement 2020 6:39

    Content type: Research article

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  26. The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates pat...

    Authors: Dawn P. Richards, Kathryn A. Birnie, Kathleen Eubanks, Therese Lane, Delane Linkiewich, Lesley Singer, Jennifer N. Stinson and Kimberly N. Begley

    Citation: Research Involvement and Engagement 2020 6:38

    Content type: Commentary

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  27. In 2014 Parkinson’s UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be dev...

    Authors: Angeliki Bogosian, Lorna Rixon and Catherine S. Hurt

    Citation: Research Involvement and Engagement 2020 6:35

    Content type: Research article

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  28. There are increasing calls for patient involvement in sharing health research results, but no evidence-based recommendations to guide such involvement. Our objectives were to: (1) conduct a systematic review o...

    Authors: Lauri Arnstein, Anne Clare Wadsworth, Beverley Anne Yamamoto, Richard Stephens, Kawaldip Sehmi, Rachel Jones, Arabella Sargent, Thomas Gegeny and Karen L. Woolley

    Citation: Research Involvement and Engagement 2020 6:34

    Content type: Research article

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  29. Exchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners...

    Authors: Emma Hovén, Lars Eriksson, Åsa Månsson D’Souza, Johanna Sörensen, David Hill, Carolin Viklund, Lena Wettergren and Claudia Lampic

    Citation: Research Involvement and Engagement 2020 6:33

    Content type: Research article

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  30. Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-eviden...

    Authors: Dirk-Wouter Smits, Karen van Meeteren, Martijn Klem, Mattijs Alsem and Marjolijn Ketelaar

    Citation: Research Involvement and Engagement 2020 6:30

    Content type: Methodology

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  31. Although considered important, the direct involvement of young children in research design is scarce and to our knowledge its impact has never been measured. We aim to demonstrate impact of young children’s in...

    Authors: Therese Casanova, Carla Black, Sheima Rafiq, Jessica Hugill-Jones, Jenny C. A. Read and Kathleen Vancleef

    Citation: Research Involvement and Engagement 2020 6:29

    Content type: Research article

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  32. Musculoskeletal (MSK) pain is a global public health problem with increased societal burden. Increased attention has focused toward patient and other stakeholder perspectives when determining future MSK pain r...

    Authors: Jason M. Beneciuk, Dorothy Verstandig, Chuck Taylor, Doug Scott, Joan Levin, Raine Osborne, Joel E. Bialosky, Trevor A. Lentz, Tava Buck, Anita L. Davis, Christina Harder, Monika B. Beneciuk, Virgil Wittmer, James Sylvester, Robert Rowe, David McInnes…

    Citation: Research Involvement and Engagement 2020 6:28

    Content type: Research article

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  33. Although participatory research is known to have advantages, it is unclear how participatory research can best be performed. This study aims to report on lessons learned in collaboration with service users involv...

    Authors: Aukelien Scheffelaar, Nanne Bos, Marjan de Jong, Mattanja Triemstra, Sandra van Dulmen and Katrien Luijkx

    Citation: Research Involvement and Engagement 2020 6:27

    Content type: Research article

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  34. Canadian Emergency Departments (EDs) have seen increasing use by children and youth for mental health concerns in recent years. This trend is likely a result of several complex factors, and researcher-posed po...

    Authors: Leslie Anne Campbell, David Lovas, Ellen Withers and Kylie Peacock

    Citation: Research Involvement and Engagement 2020 6:26

    Content type: Research article

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  35. Patient engagement strategies in health service delivery have become more common in recent years. However, many healthcare organizations are challenged in identifying the best methods to engage patients in hea...

    Authors: Brian Lo, Timothy Zhang, Kevin Leung, Rohan Mehta, Craig Kuziemsky, Richard G. Booth, Anna Chyjek, Sarah Collins Rossetti, Drew McLean, Elizabeth Borycki, David McLay, Justin Noble, Shawn Carter and Gillian Strudwick

    Citation: Research Involvement and Engagement 2020 6:25

    Content type: Methodology

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  36. The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of...

    Authors: Stephanie A. Chamberlain, Carole A. Estabrooks, Janice M. Keefe, Matthias Hoben, Charlotte Berendonk, Kyle Corbett and Andrea Gruneir

    Citation: Research Involvement and Engagement 2020 6:24

    Content type: Research article

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  37. There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the publi...

    Authors: Shoba Dawson, Angela Ruddock, Veena Parmar, Rebecca Morris, Sudeh Cheraghi-Sohi, Sally Giles and Stephen Campbell

    Citation: Research Involvement and Engagement 2020 6:23

    Content type: Research article

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  38. Funding bodies increasingly require researchers to write lay summaries to communicate projects’ real-world relevance to the public in an accessible way. However, research proposals and findings are generally n...

    Authors: Mineko Wada, Judith Sixsmith, Gail Harwood, Theodore D. Cosco, Mei Lan Fang and Andrew Sixsmith

    Citation: Research Involvement and Engagement 2020 6:22

    Content type: Protocol

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  39. Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunit...

    Authors: C. Mitchell, K. Burke, N. Halford, K. Rothwell, S. Darley, K. Woodward-Nutt, A. Bowen and E. Patchwood

    Citation: Research Involvement and Engagement 2020 6:21

    Content type: Research article

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  40. A small medical school research project entitled ‘PPI to strengthen clinical and population health research’ caused me to look at an entirely new field – that of Public and Patient Involvement (PPI). PPI is the d...

    Authors: Joseph Lewis

    Citation: Research Involvement and Engagement 2020 6:20

    Content type: Letter

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    The original article was published in Research Involvement and Engagement 2020 6:13

  41. Researchers test treatments to ensure these work and are safe. They do this by studying the effects that treatments have on patients by measuring outcomes, such as pain and quality of life. Often research team...

    Authors: Frances C. Sherratt, Heather Bagley, Simon R. Stones, Jenny Preston, Nigel J. Hall, Sarah L. Gorst and Bridget Young

    Citation: Research Involvement and Engagement 2020 6:19

    Content type: Commentary

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  42. By participating in priority-setting activities in research, patients and members of the public help ensure that important questions are incorporated into future research agendas. Surveys, focus groups, and on...

    Authors: Danielle C. Lavallee, Sarah O. Lawrence, Andrew L. Avins, David R. Nerenz, Todd C. Edwards, Donald L. Patrick, Zoya Bauer, Anjali R. Truitt, Sarah E. Monsell, Mary R. Scott and Jeffrey G. Jarvik

    Citation: Research Involvement and Engagement 2020 6:18

    Content type: Research article

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  43. People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people exp...

    Authors: D. Cavers, S. Cunningham-Burley, E. Watson, E. Banks and C. Campbell

    Citation: Research Involvement and Engagement 2020 6:17

    Content type: Research article

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  44. The ROLO Study (Randomised cOntrol trial of a Low glycaemic index diet in pregnancy to prevent macrosomia) was a randomised control trial conducted between 2007 and 2011 to examine if a low glycaemic index (GI...

    Authors: N. M. Walsh, E. C. O’Brien, A. A. Geraghty, D. F. Byrne, A. Whelan, S. Reilly, S. Murray, C. Reilly, E. Adams, P. M. Farnan and F. M. McAuliffe

    Citation: Research Involvement and Engagement 2020 6:16

    Content type: Research article

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  45. Cancer trials often incorporate intensive imaging with Magnetic Resonance Imaging (MRI) and Positron Emission Tomography with Computerised Tomography (PET/CT), which can be physically and mentally exhausting f...

    Authors: Katherine May, Martin Lee, Monica Jefford, Ana Ribeiro, Alison Macdonald, Veronica Morgan, Marianne Usher and Nandita M. de Souza

    Citation: Research Involvement and Engagement 2020 6:15

    Content type: Research article

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