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  1. There is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived...

    Authors: Maria Haak, Synneve Ivanoff, Emmelie Barenfeld, Isak Berge and Qarin Lood

    Citation: Research Involvement and Engagement 2021 7:91

    Content type: Research article

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  2. Meaningful public involvement in maternity research remains challenging, partly due to the transient nature of pregnancy. This paper reflects on the development, implementation and simple evaluation of an inno...

    Authors: Laura Goodwin, Magdalena Skrybant and Sara Kenyon

    Citation: Research Involvement and Engagement 2021 7:90

    Content type: Methodology

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  3. Patient and Public Involvement and Engagement (PPIE) in research positively affects the relevance, quality, and impact of research. Around 11% of studies published in leading medical journals demonstrate PPIE....

    Authors: Richard Gray, Catherine Brasier, Tessa-May Zirnsak and Ashley H. Ng

    Citation: Research Involvement and Engagement 2021 7:88

    Content type: Research article

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  4. Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute f...

    Authors: Alison M. Aries, Paul Bailey and Susan M. Hunter

    Citation: Research Involvement and Engagement 2021 7:87

    Content type: Research article

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  5. Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) communi...

    Authors: Emily M. Godfrey, Erin K. Thayer, Laura Mentch, Traci M. Kazmerski, Georgia Brown, Molly Pam and Morhaf Al Achkar

    Citation: Research Involvement and Engagement 2021 7:86

    Content type: Research article

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  6. The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collect...

    Authors: Nicola Small, Bie Nio Ong, Annmarie Lewis, Dawn Allen, Nigel Bagshaw, Papreen Nahar and Caroline Sanders

    Citation: Research Involvement and Engagement 2021 7:85

    Content type: Research article

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  7. The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Allia...

    Authors: Janet L. Wale, Louisa Di Pietro, Heather Renton, Margaret Sahhar, Christine Walker, Pamela Williams, Karen Meehan, Elly Lynch, Melissa Martyn, Jane Bell, Ingrid Winship and Clara L. Gaff

    Citation: Research Involvement and Engagement 2021 7:84

    Content type: Commentary

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  8. In some jurisdictions, patients and patient groups may be invited to provide input when Health Technology Assessment (HTA) is used to inform decisions about which medicines should be subsidised or funded. This...

    Authors: Ann Single, Ariana Cabrera, Simon Fifer, Jane Tsai, Jin-Young Paik and Philip Hope

    Citation: Research Involvement and Engagement 2021 7:83

    Content type: Research article

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  9. Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of ...

    Authors: Rebecca Foster, Hannah Carver, Jason Wallace, Alex Dunedin, Stan Burridge, Philip Foley, Bernie Pauly and Tessa Parkes

    Citation: Research Involvement and Engagement 2021 7:82

    Content type: Commentary

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  10. ReIMAGINE aims to improve the current prostate specific antigen (PSA)/biopsy risk stratification for prostate cancer (PCa) and develop a new image-based method (with biomarkers) for diagnosing high/low risk PC...

    Authors: S. Green, S. Tuck, J. Long, T. Green, A. Green, P. Ellis, A. Haire, C. Moss, F. Cahill, N. McCartan, L. Brown, A. Santaolalla, T. Marsden, M. Rodriquez Justo, J. Hadley, S. Punwani…

    Citation: Research Involvement and Engagement 2021 7:81

    Content type: Commentary

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  11. Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/o...

    Authors: Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson and Steven M. Schmidt

    Citation: Research Involvement and Engagement 2021 7:80

    Content type: Research article

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  12. Immigrants often find accessing and navigating the healthcare system difficult upon arriving in Canada. Existing challenges of accessing healthcare due to differing cultural norms, language barriers, limited h...

    Authors: Lindsey Boechler, Steven Renwick, Abdullateef Alabi, Harold de la Torre, Susheel Kumar, Harmanpreet Singh, Roshan Xavier, Dalise Hector, Lauren McTaggart and Jennifer Shrubsole

    Citation: Research Involvement and Engagement 2021 7:79

    Content type: Commentary

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  13. Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study e...

    Authors: Kinga Pozniak, Francine Buchanan, Andrea Cross, Jennifer Crowson, Barb Galuppi, Danijela Grahovac, Jan Willem Gorter, Oksana Hlyva, Marjolijn Ketelaar, Olaf Kraus de Camargo, Manda Krpan Mesic, Rachel Martens, Dayle McCauley, Linda Nguyen, Robert J. Palisano, Michelle Phoenix…

    Citation: Research Involvement and Engagement 2021 7:78

    Content type: Research article

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  14. This paper describes a model developed by an interdisciplinary team of research and public engagement specialists, with backgrounds in health and social care research, higher education, evidence-based practice...

    Authors: Heidi Ormstad, Gro Jamtvedt, Ida Svege and Sally Crowe

    Citation: Research Involvement and Engagement 2021 7:77

    Content type: Review article

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  15. In the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despi...

    Authors: Melissa Courvoisier, Richelle Baddeliyanage, Linda Wilhelm, Lorraine Bayliss, Sharon E. Straus and Christine Fahim

    Citation: Research Involvement and Engagement 2021 7:76

    Content type: Research article

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  16. Participating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disprop...

    Authors: Marjory Charlot, Kelsi Carolan, Cyrena Gawuga, Elmer Freeman and Linda Sprague Martinez

    Citation: Research Involvement and Engagement 2021 7:74

    Content type: Research article

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  17. During the COVID-19 pandemic many work tasks are being done remotely through digital meetings, including PPI in research. Yet, some PPI activities have been paused or cancelled altogether during the pandemic. ...

    Authors: Elin Lampa, Björn Sonnentheil, Antónia Tökés and Georgina Warner

    Citation: Research Involvement and Engagement 2021 7:73

    Content type: Commentary

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  18. Patient-oriented research affords individuals with opportunities to genuinely contribute to health care research as members of research teams. While checklists and frameworks can support academic researchers’ ...

    Authors: Elaine Zibrowski, Tracey Carr, Shelagh McDonald, Heather Thiessen, Ray van Dusen, Donna Goodridge, Charlene Haver, Darcy Marciniuk, Christine Stobart, Tanya Verrall and Gary Groot

    Citation: Research Involvement and Engagement 2021 7:72

    Content type: Review article

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  19. The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff i...

    Authors: Stephanie A. Chamberlain, Andrea Gruneir, Janice M. Keefe, Charlotte Berendonk, Kyle Corbett, Roberta Bishop, Graham Bond, Faye Forbes, Barbara Kieloch, Jim Mann, Christine Thelker and Carole A. Estabrooks

    Citation: Research Involvement and Engagement 2021 7:71

    Content type: Research article

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  20. To improve health equity, as well as equity in research, community-engaged research and participatory research needs to be inclusive. Equity in health research refers to the principle that anyone affected by r...

    Authors: Christine Loignon, Sophie Dupéré, Caroline Leblanc, Karoline Truchon, Amélie Bouchard, Johanne Arsenault, Julia Pinheiro Carvalho, Alexandrine Boudreault-Fournier and Sylvain Aimé Marcotte

    Citation: Research Involvement and Engagement 2021 7:70

    Content type: Commentary

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  21. The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff i...

    Authors: Jim Mann, Roberta Bishop, Graham Bond, Faye Forbes, Barbara Kieloch, Christine Thelker and Stephanie A. Chamberlain

    Citation: Research Involvement and Engagement 2021 7:69

    Content type: Commentary

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  22. Power assisted exercise is accessible and acceptable for people with stroke. The potential for technological advancement of the equipment to improve the user experience has been identified. Involvement of end ...

    Authors: Rachel Young, Karen Sage, David Broom, Katherine Broomfield, Gavin Church and Christine Smith

    Citation: Research Involvement and Engagement 2021 7:68

    Content type: Research article

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  23. Patient and public involvement and engagement (PPIE) is recognised as an essential part of health research. In addition to providing an opportunity for patients to shape health research and acquire research sk...

    Authors: Anne Aboaja, Oluwatosin Atewogboye, Mudassar Arslan, Lucia Parry-Newton and Lindsey Wilson

    Citation: Research Involvement and Engagement 2021 7:67

    Content type: Research article

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  24. Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not research...

    Authors: Sally Crowe, Eleanor Barker, Meg Roberts, Lucy Lloyd, Clara M. de Barros, Ben Rebelo-Harris, Catherine Meads and Catherine L. Saunders

    Citation: Research Involvement and Engagement 2021 7:64

    Content type: Research article

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  25. Core outcome sets (COS) are lists of consensus-determined outcomes to be measured and reported in all clinical research studies within a disease area. While including patients and families in COS development t...

    Authors: Shelley M. Vanderhout, Maureen Smith, Nicole Pallone, Kylie Tingley, Michael Pugliese, Pranesh Chakraborty, Sylvia Stockler, Martin Offringa, Nancy Butcher, Stuart G. Nicholls and Beth K. Potter

    Citation: Research Involvement and Engagement 2021 7:66

    Content type: Commentary

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  26. There is an apparent reluctance to engage ‘vulnerable’ participants in conversation about sensitive topics such as suicide and violence and this can often lead to a paucity of research in these areas. This stu...

    Authors: Laura Hemming, Daniel Pratt, Gillian Haddock, Peer Bhatti and Jennifer Shaw

    Citation: Research Involvement and Engagement 2021 7:65

    Content type: Research article

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  27. Involving patients and their carers in research has become more common, as funders demand evidence of involvement. The ‘Patient Voice in Cancer Research’ (PVCR) is an initiative led by University College Dubli...

    Authors: Éidín Ní Shé, Aoife Gordan, Barbara Hughes, Tom Hope, Teresa McNally, Ramon Whelan, Mary Staunton, Margaret Grayson, Liane Hazell, Iseult Wilson, Richard Stephens, Elaine Quinn and Amanda McCann

    Citation: Research Involvement and Engagement 2021 7:63

    Content type: Research article

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  28. This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to ...

    Authors: Soren Eik Skovlund, Lise H. Troelsen, Lotte Klim, Poul Erik Jakobsen and Niels Ejskjaer

    Citation: Research Involvement and Engagement 2021 7:62

    Content type: Research article

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  29. Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. ...

    Authors: Mareike Dreier, Johanna Baumgardt, Thomas Bock, Martin Härter and Sarah Liebherz

    Citation: Research Involvement and Engagement 2021 7:60

    Content type: Research article

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  30. Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse ...

    Authors: N. S. Goedhart, C. A. C. M. Pittens, S. Tončinić, T. Zuiderent-Jerak, C. Dedding and J. E. W. Broerse

    Citation: Research Involvement and Engagement 2021 7:59

    Content type: Review article

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  31. A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is...

    Authors: Elly Park, Mary Forhan and C. Allyson Jones

    Citation: Research Involvement and Engagement 2021 7:58

    Content type: Research article

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  32. The effective impact of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical ...

    Authors: David Feldman, Paola Kruger, Laure Delbecque, Ashley Duenas, Oana Bernard-Poenaru, Séverine Wollenschneider, Nick Hicks, Janine Ann Reed, Ify Sargeant, Chi Pakarinen and Anne-Marie Hamoir

    Citation: Research Involvement and Engagement 2021 7:57

    Content type: Research article

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  33. The impact of child health research can be far reaching; affecting children’s immediate health, their adult health, the health of future generations and the economic wellbeing of countries. Consumer and commun...

    Authors: Fenella J. Gill, Catherine Pienaar and Tanya Jones

    Citation: Research Involvement and Engagement 2021 7:56

    Content type: Methodology

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  34. Collaborating with end-users to develop interventions tailored to fit unique circumstances is proposed as a way to improve relevance and effectiveness of an intervention. This study used a local needs driven a...

    Authors: Millicent Addai Boateng, Eter Agyei-Baffour, Sanne Angel, Ofeibea Asare, Benjamin Prempeh and Ulrika Enemark

    Citation: Research Involvement and Engagement 2021 7:55

    Content type: Research article

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  35. The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research ...

    Authors: Sara S. Masoud, Ashlie A. Glassner, Neela Patel, Mayra Mendoza, Deborah James, Sheran Rivette and Carole L. White

    Citation: Research Involvement and Engagement 2021 7:54

    Content type: Research article

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  36. Increasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented. Critiques of PPI bein...

    Authors: Joanna Reynolds, Margaret Ogden and Ruth Beresford

    Citation: Research Involvement and Engagement 2021 7:53

    Content type: Research article

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  37. Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. Ther...

    Authors: Julia Jones, Marion Cowe, Sue Marks, Tony McAllister, Alex Mendoza, Carole Ponniah, Helena Wythe and Elspeth Mathie

    Citation: Research Involvement and Engagement 2021 7:52

    Content type: Research article

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  38. Photovoice is a method used to help engage community members to understand local realities and promote social change. Photovoice uses cameras in the hands of participants as a tool to visually document a speci...

    Authors: Tara B. Mtuy, Jeremiah Mepukori, Joseph Lankoi and Shelley Lees

    Citation: Research Involvement and Engagement 2021 7:51

    Content type: Commentary

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  39. Involving patients and communities with health research in low- and middle-income countries (LMICs) contributes to increasing the likelihood that research is relevant in local context and caters to the needs o...

    Authors: Karolin Kroese, Bernard Appiah Ofori, Darling Ramatu Abdulai, Mark Monahan, Angela Prah and Stephen Tabiri

    Citation: Research Involvement and Engagement 2021 7:50

    Content type: Research article

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  40. Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, careg...

    Authors: Pooja Saini, Shaima M. Hassan, Esmaeil Khedmati Morasae, Mark Goodall, Clarissa Giebel, Saiqa Ahmed, Anna Pearson, Lesley M. Harper, Jane Cloke, Jenny Irvine and Mark Gabbay

    Citation: Research Involvement and Engagement 2021 7:49

    Content type: Research article

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  41. Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a...

    Authors: Renske Visser, Alyce-Ellen Barber, Anthony X, Sue Wheatcroft, Philip Mullen and Jo Armes

    Citation: Research Involvement and Engagement 2021 7:48

    Content type: Commentary

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  42. Engaging parents in child health research can facilitate choosing relevant research questions, recruiting participants who reflect the diversity of large communities, and disseminating study results to communi...

    Authors: Shelley M. Vanderhout, Catherine S. Birken, Maria Zaccaria Cho and Jonathon L. Maguire

    Citation: Research Involvement and Engagement 2021 7:47

    Content type: Commentary

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  43. Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has th...

    Authors: Safina Islam, Olivia Joseph, Atiha Chaudry, Davine Forde, Annie Keane, Cassie Wilson, Nasima Begum, Suzanne Parsons, Tracy Grey, Leah Holmes and Bella Starling

    Citation: Research Involvement and Engagement 2021 7:46

    Content type: Methodology

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  44. The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved i...

    Authors: Marjolein van Rooijen, Anneke van Dijk-de Vries, Stephanie Lenzen, Ruth Dalemans, Albine Moser and Anna Beurskens

    Citation: Research Involvement and Engagement 2021 7:45

    Content type: Research article

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  45. The objectives are to: 1) describe engagement processes used to prioritize and address regional comprehensive cancer control needs among a Community-Academic Advisory Board (CAB) in the medically-underserved, ...

    Authors: Jamie M. Zoellner, Kathleen J. Porter, Donna-Jean P. Brock, Emma Mc Kim Mitchell, Howard Chapman Jr, Deborah Clarkston, Wendy Cohn, Lindsay Hauser, Dianne W. Morris, Sarah Y. Ramey, Brenna Robinson, Scott Schriefer, Noelle Voges and Kara P. Wiseman

    Citation: Research Involvement and Engagement 2021 7:44

    Content type: Research article

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  46. This paper presents a user involvement process, called needs-led research, conducted as a part of a doctoral degree project aiming to explore research priorities and, ultimately, to develop a final top 10 list...

    Authors: Ruth-Ellen Slåtsveen, Torunn Wibe, Liv Halvorsrud and Anne Lund

    Citation: Research Involvement and Engagement 2021 7:43

    Content type: Research article

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  47. Clinical Trials Units are encouraged to integrate Patient and Public Involvement (PPI) into all aspects of trial design, running and oversight. This research explored the induction and training of PPI Contribu...

    Authors: Emily C. Pickering, Bec Hanley, Philip Bell, Jacqui Gath, Patrick Hanlon, Robert Oldroyd, Richard Stephens and Conor D. Tweed

    Citation: Research Involvement and Engagement 2021 7:42

    Content type: Research article

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