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  1. England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health da...

    Authors: C. Atkin, B. Crosby, K. Dunn, G. Price, E. Marston, C. Crawford, M. O’Hara, C. Morgan, M. Levermore, S. Gallier, S. Modhwadia, J. Attwood, S. Perks, A. K. Denniston, G. Gkoutos, R. Dormer…

    Citation: Research Involvement and Engagement 2021 7:40

    Content type: Research article

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  2. Access to, and awareness of, appropriate authorship criteria is an important right for patient partners. Our objective was to measure medical journal Editors-in-Chief’ perceptions of including patients as (co-...

    Authors: Kelly D. Cobey, Zarah Monfaredi, Evelyn Poole, Laurie Proulx, Dean Fergusson and David Moher

    Citation: Research Involvement and Engagement 2021 7:39

    Content type: Research article

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  3. In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners fo...

    Authors: Lisa Hartling, Sarah A. Elliott, Kelli Buckreus, Julie Leung and Shannon D. Scott

    Citation: Research Involvement and Engagement 2021 7:38

    Content type: Research article

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  4. Guidelines for patient decision aids (DA) recommend target population involvement throughout the development process, but developers may struggle because of limited resources. We sought to develop a feasible m...

    Authors: Kevin Selby, Regula Cardinaux, Beatrice Metry, Simone de Rougemont, Janine Chabloz, Verena Meier-Herrmann, Jürg Stoller, Marie-Anne Durand and Reto Auer

    Citation: Research Involvement and Engagement 2021 7:37

    Content type: Research article

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  5. During care transitions, the older (75+) patient’s agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving pa...

    Authors: Troels Kjærskov Hansen, Annesofie Lunde Jensen, Else Marie Damsgaard, Tone Maria Mørck Rubak, Mikkel Erik Juul Jensen and Merete Gregersen

    Citation: Research Involvement and Engagement 2021 7:36

    Content type: Research article

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  6. In July 2020 Cancer Research UK undertook a rapid review of the studies in its clinical research portfolio to assess the impact of the Covid-19 pandemic. The review examined over 160 research studies funded by...

    Authors: Anne Croudass and Richard Stephens

    Citation: Research Involvement and Engagement 2021 7:35

    Content type: Commentary

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  7. Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (res...

    Authors: Sarah E. Knowles, Dawn Allen, Ailsa Donnelly, Jackie Flynn, Kay Gallacher, Annmarie Lewis, Grace McCorkle, Manoj Mistry, Pat Walkington and Jess Drinkwater

    Citation: Research Involvement and Engagement 2021 7:34

    Content type: Research article

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  8. A controlled human infection model (CHIM) involves deliberate exposure of volunteers to pathogens to assess their response to new therapies at an early stage of development. We show here how we used public inv...

    Authors: Vivak Parkash, Georgina Jones, Nina Martin, Morgan Steigmann, Elizabeth Greensted, Paul Kaye, Alison M. Layton and Charles J. Lacey

    Citation: Research Involvement and Engagement 2021 7:33

    Content type: Research article

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  9. Australian women from migrant and refugee communities experience reduced access to sexual and reproductive healthcare. Human-centred design can be a more ethical and effective approach to developing health sol...

    Authors: Rebeccah Bartlett, Jacqueline A. Boyle, Jessica Simons Smith, Nadia Khan, Tracy Robinson and Rohit Ramaswamy

    Citation: Research Involvement and Engagement 2021 7:32

    Content type: Research article

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  10. In line with Good Clinical Practice and the Declaration of Helsinki, it is the investigator’s responsibility to ensure that research participants are sufficiently informed, to enable the provision of informed ...

    Authors: Eleanor Coleman, Lydia O’Sullivan, Rachel Crowley, Moira Hanbidge, Seán Driver, Thilo Kroll, Aoife Kelly, Alistair Nichol, Orlaith McCarthy, Prasanth Sukumar and Peter Doran

    Citation: Research Involvement and Engagement 2021 7:31

    Content type: Research article

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  11. A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult publ...

    Authors: Laura Postma, Malou L. Luchtenberg, A. A. Eduard Verhagen and Els L. M. Maeckelberghe

    Citation: Research Involvement and Engagement 2021 7:30

    Content type: Research article

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  12. Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with...

    Authors: Perry R. Fleming, Makayla M. Swygert, Coen Hasenkamp, Jessica Sterling, Ginny Cartee, Rebecca Russ-Sellers, Melanie Cozad, Renee J. Chosed, William E. Roudebush and Ann Blair Kennedy

    Citation: Research Involvement and Engagement 2021 7:29

    Content type: Commentary

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  13. Participatory approaches to developing health interventions with end-users are recommended to improve uptake and use. We aimed to explore the experiences of co-designing an online-delivered pain management pro...

    Authors: Hemakumar Devan, Meredith A. Perry, Mostafa Yaghoubi and Leigh Hale

    Citation: Research Involvement and Engagement 2021 7:28

    Content type: Research article

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  14. The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as...

    Authors: Colin Macarthur, Catharine M. Walsh, Francine Buchanan, Aliza Karoly, Linda Pires, Graham McCreath and Nicola L. Jones

    Citation: Research Involvement and Engagement 2021 7:27

    Content type: Methodology

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  15. Citizen involvement is important for ensuring the relevance and quality of many research and innovation efforts. Literature shows that inadequate citizen involvement poses an obstacle during the research, deve...

    Authors: Anne Lund, Torhild Holthe, Liv Halvorsrud, Dag Karterud, Adele Flakke Johannessen, Hilde Margrethe Lovett, Erik Thorstensen, Flávia Dias Casagrande, Evi Zouganeli, Reidun Norvoll and Ellen Marie Forsberg

    Citation: Research Involvement and Engagement 2021 7:26

    Content type: Commentary

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  16. Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibili...

    Authors: Tamara L. McCarron, Fiona Clement, Jananee Rasiah, Karen Moffat, Tracy Wasylak and Maria Jose Santana

    Citation: Research Involvement and Engagement 2021 7:25

    Content type: Commentary

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  17. APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis to enable future differential diagnosis and treatment. During a 2-year clinical study images, bio...

    Authors: Jane Taylor, Sjouke Dekker, Diny Jurg, Jon Skandsen, Maureen Grossman, Anne-Karien Marijnissen, Christoph Ladel, Ali Mobasheri, Jon Larkin, Harrie Weinans and Irene Kanter-Schlifke

    Citation: Research Involvement and Engagement 2021 7:24

    Content type: Commentary

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  18. It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension observational cohort study (ASPREE-XT) would provide a platform for a future multigenerational research study (MGRS). ...

    Authors: Jack S. Nunn, Merrin Sulovski, Jane Tiller, Bruce Holloway, Darshini Ayton and Paul Lacaze

    Citation: Research Involvement and Engagement 2021 7:23

    Content type: Research article

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  19. The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and...

    Authors: Kathy Seddon, Jim Elliott, Miriam Johnson, Clare White, Max Watson, Annmarie Nelson and Simon Noble

    Citation: Research Involvement and Engagement 2021 7:22

    Content type: Methodology

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  20. As patient-oriented research gains popularity in clinical research, the lack of patient input in foundational science grows more evident. Research has shown great utility in active partnerships between patient...

    Authors: Jenessa N. Johnston, Lisa Ridgway, Sarah Cary-Barnard, Josh Allen, Carla L. Sanchez-Lafuente, Brady Reive, Lisa E. Kalynchuk and Hector J. Caruncho

    Citation: Research Involvement and Engagement 2021 7:21

    Content type: Commentary

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  21. The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out...

    Authors: Sarah Cecilie Tscherning, Hilary Louise Bekker, Tina Wang Vedelø, Jeanette Finderup and Lotte Ørneborg Rodkjær

    Citation: Research Involvement and Engagement 2021 7:20

    Content type: Protocol

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  22. 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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  23. 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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  24. 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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  25. 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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  26. 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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  27. 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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  28. 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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  29. 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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  30. 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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  31. 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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  32. 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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  33. 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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  34. 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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  35. 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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  36. 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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  37. 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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  38. 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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  39. 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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  40. 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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  41. 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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  42. 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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  43. 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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  44. 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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  45. 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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  46. 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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  47. 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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