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  1. Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for comm...

    Authors: Hae-Ra Han, Ashley Xu, Kyra J. W. Mendez, Safiyyah Okoye, Joycelyn Cudjoe, Mona Bahouth, Melanie Reese, Lee Bone and Cheryl Dennison-Himmelfarb

    Citation: Research Involvement and Engagement 2021 7:19

    Content type: Research article

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  2. Collaborative working between academic institutions and those who provide health and social care has been identified as integral in order to produce acceptable, relevant, and timely research, and for outputs t...

    Authors: K. Wilkinson, J. Day, J. Thompson-Coon, V. Goodwin, K. Liabo, G. Coxon, G. Cox, C. Marriott and I. A. Lang

    Citation: Research Involvement and Engagement 2021 7:18

    Content type: Protocol

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  3. The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in t...

    Authors: Katherine Broomfield, Claire Craig, Sarah Smith, Georgina Jones, Simon Judge and Karen Sage

    Citation: Research Involvement and Engagement 2021 7:17

    Content type: Methodology

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  4. Co-production has been widely recognised as a potential means to reduce the dissatisfaction of citizens, the inefficacy of service providers, and conflicts in relations between the former and the latter. Howev...

    Authors: Eleonora Gheduzzi, Cristina Masella, Niccolò Morelli and Guendalina Graffigna

    Citation: Research Involvement and Engagement 2021 7:16

    Content type: Research article

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  5. Medical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this “top-down” approach is certainly efficient at forc...

    Authors: Denis Boutin, Susan C. Mastine, Luc Beaubien, Maryse Berthiaume, Denise Boilard, Jaime Borja, Edouard Botton, Janie Boulianne-Gref, Sylvie Breton, Christian-Alexandre Castellano, Gisèle Charpentier, Francois-Pierre Counil, Marie-Josée Cozmano, Pierre Dagenais, Guy Drouin, Marie-Josée Fortier…

    Citation: Research Involvement and Engagement 2021 7:15

    Content type: Methodology

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  6. Patient and Public Involvement (PPI) describes the active involvement of patients and the public in the research process. Through PPI, patients and members of the public are increasingly involved in the design...

    Authors: Zahra Jamal, Alexander Perkins, Christopher Allen, Richard Evans, Joanna Sturgess, Claire Snowdon, Tim Clayton and Diana Elbourne

    Citation: Research Involvement and Engagement 2021 7:13

    Content type: Research article

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  7. In sub-Saharan Africa (SSA), which experiences a disproportionately high cardiovascular disease (CVD) burden, population-based screening and prevention measures are hampered by low levels of knowledge about CV...

    Authors: Kufre Joseph Okop, Kathy Murphy, Estelle Victoria Lambert, Kiya Kedir, Hailemichael Getachew, Rawleigh Howe, Jean Berchmans Niyibizi, Selemani Ntawuyirushintege, Charlotte Bavuma, Stephen Rulisa, Stephen Kasenda, Effie Chipeta, Christopher Bunn, Amelia C. Crampin, Gertrude Chapotera, Abby C. King…

    Citation: Research Involvement and Engagement 2021 7:11

    Content type: Protocol

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  8. Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum a...

    Authors: Audrey L’Espérance, Nadia O’Brien, Alexandre Grégoire, Julia Abelson, Carolyn Canfield, Claudio Del Grande, Maman Joyce Dogba, Carol Fancott, Mary Anne Levasseur, Christine Loignon, Annette Majnemer, Marie-Pascale Pomey, Jananee Rasiah, Jon Salsberg, Maria Santana, Marie-Claude Tremblay…

    Citation: Research Involvement and Engagement 2021 7:10

    Content type: Protocol

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  9. The role of patients in medical research is changing, as more emphasis is being placed on patient involvement, and patient reported outcomes are increasingly contributing to clinical decision-making. Informati...

    Authors: Nao Hamakawa, Atsushi Kogetsu, Moeko Isono, Chisato Yamasaki, Shirou Manabe, Toshihiro Takeda, Kazumasa Iwamoto, Tomoya Kubota, Joe Barrett, Nathanael Gray, Alison Turner, Harriet Teare, Yukie Imamura, Beverley Anne Yamamoto, Jane Kaye, Michihiro Hide…

    Citation: Research Involvement and Engagement 2021 7:9

    Content type: Research article

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  10. The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging ...

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

    Citation: Research Involvement and Engagement 2021 7:8

    Content type: Review article

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  11. Historically, few publications exist where patient engagement in clinical studies is a driving force in study design and implementation. The Patient Centered Outcomes Research Institute (PCORI), established in...

    Authors: Scott Kixmiller, Anquenette P. Sloan, Summer Wadsworth, Finton Brown, Lourdes Chaney, Larry Houston and Kim Thomas

    Citation: Research Involvement and Engagement 2021 7:7

    Content type: Review article

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  12. Eczema is a common childhood condition, causing dry and itchy skin which can be difficult to manage. We have been undertaking eczema and food allergy research to address previously prioritised research questio...

    Authors: Anna Gilbertson, Matthew J. Ridd, Eileen Sutton, Lyn Liddiard, Julie Clayton, Amanda Roberts, Jonathan Chan, Alisha Bhanot, Rosie Wellesley and Shoba Dawson

    Citation: Research Involvement and Engagement 2021 7:6

    Content type: Methodology

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  13. Researchers have explored different types of treatment to help people with a mental illness with other problems they might be experiencing, such as their health condition and quality of life. Care models that ...

    Authors: Lenka Vojtila, Iqra Ashfaq, Augustina Ampofo, Danielle Dawson and Peter Selby

    Citation: Research Involvement and Engagement 2021 7:5

    Content type: Commentary

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  14. The Peers Supporting Health Literacy, Self-efficacy, Self-Advocacy, and Adherence (Peers LEAD) program is a culturally tailored educational-behavioral 8-week intervention that addressed psychosocial and socioc...

    Authors: Olayinka O. Shiyanbola, Betty L. Kaiser, Gay R. Thomas and Adati Tarfa

    Citation: Research Involvement and Engagement 2021 7:4

    Content type: Commentary

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  15. Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom l...

    Authors: Stephanie Tierney, Shoba Dawson, Anne-Marie Boylan, Gillian Richards, Sophie Park, Amadea Turk and Opeyemi Babatunde

    Citation: Research Involvement and Engagement 2021 7:3

    Content type: Methodology

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  16. There is often a great urgency to be inclusive when conducting research and to focus efforts with groups and communities that can be referred to as marginalised. This is especially the case in research concern...

    Authors: Nichola Abrehart, Kate Frost, Roy Harris, Andrew Wragg, Derek Stewart, Hayfa Sharif, Rachel Matthews and Luca Marciani

    Citation: Research Involvement and Engagement 2021 7:2

    Content type: Commentary

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  17. Health technology assessment (HTA) agencies have an important role in the evaluation and approval of new technologies. They determine their value within a health system so to promote equitable, quality care wi...

    Authors: Janet L. Wale, Samuel Thomas, Dominique Hamerlijnck and Ronald Hollander

    Citation: Research Involvement and Engagement 2021 7:1

    Content type: Commentary

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  18. The COVID-19 pandemic has uniquely affected children and families by disrupting routines, changing relationships and roles, and altering usual child care, school and recreational activities. Understanding the ...

    Authors: Shelley M. Vanderhout, Catherine S. Birken, Peter Wong, Sarah Kelleher, Shannon Weir and Jonathon L. Maguire

    Citation: Research Involvement and Engagement 2020 6:69

    Content type: Commentary

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  19. The James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. The method is increasingly used but publications primarily discuss the outcome of such projects...

    Authors: Karin Jongsma, Juliette van Seventer, Anouk Verwoerd and Annemiek van Rensen

    Citation: Research Involvement and Engagement 2020 6:68

    Content type: Research article

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  20. Community involvement is important in good research practice. We led a community-based study to improve early detection and treatment of childhood hearing loss in rural Alaska. This study evaluated a cell phon...

    Authors: Samantha Kleindienst Robler, S. Meade Inglis, Joseph J. Gallo, Heather E. Parnell, Paul Ivanoff, Stephanie Ryan, Cole D. Jenson, Alexandra Ross, Alain Labrique, Nae-Yuh Wang and Susan D. Emmett

    Citation: Research Involvement and Engagement 2020 6:67

    Content type: Research article

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  21. We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in re...

    Authors: Teri Browne, Amy Swoboda, Patti L. Ephraim, Katina Lang-Lindsey, Jamie A. Green, Felicia Hill-Briggs, George L. Jackson, Suzanne Ruff, Lana Schmidt, Peter Woods, Patty Danielson, Shakur Bolden, Brian Bankes, Chelsie Hauer, Tara Strigo and L. Ebony Boulware

    Citation: Research Involvement and Engagement 2020 6:66

    Content type: Research article

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  22. Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the ...

    Authors: Divya Kanwar Bhati, Michael Fitzgerald, Claire Kendall and Simone Dahrouge

    Citation: Research Involvement and Engagement 2020 6:65

    Content type: Research article

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  23. 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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  24. 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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  25. 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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  26. 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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  27. 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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  28. 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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  29. 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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  30. 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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  31. 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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  32. 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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  33. 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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  34. 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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  35. 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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  36. 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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  37. 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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  38. 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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  39. 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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  40. 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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  41. 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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  42. 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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  43. 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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  44. 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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  45. 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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  46. 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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  47. 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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