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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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

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

  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. The PROUD trial, a HIV prevention trial in men who have sex with men and trans women, set out to involve community representatives and trial participants in several ways. PROUD also aimed to evaluate participa...

    Authors: Mitzy Gafos, Annabelle South, Bec Hanley, Elizabeth Brodnicki, Matthew Hodson, Sheena McCormack, T. Charles Witzel, Justin Harbottle and Claire Vale
    Citation: Research Involvement and Engagement 2020 6:13

    The Letter to this article has been published in Research Involvement and Engagement 2020 6:20

  21. In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerm...

    Authors: Joanne Evans and Stan (Constantina) Papoulias
    Citation: Research Involvement and Engagement 2020 6:12
  22. An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such coll...

    Authors: Tommy Carlsson, Ulla Melander Marttala and Elisabet Mattsson
    Citation: Research Involvement and Engagement 2020 6:10
  23. Parents are increasingly searching online for information supported by research but can find it difficult to identify results relevant to their own experiences. More troublingly, a number of studies indicate t...

    Authors: Sophia Collins, Rebecca Brueton, Tamasin Greenough Graham, Stephanie Organ, Amy Strother, Sarah Elizabeth West and Jean McKendree
    Citation: Research Involvement and Engagement 2020 6:9
  24. Public voices have largely been absent from the discussions about open access publishing in medical research. Yet the public have a strong interest in ensuring open access of medical research findings because ...

    Authors: Suzanne Day, Stuart Rennie, Danyang Luo and Joseph D. Tucker
    Citation: Research Involvement and Engagement 2020 6:8
  25. Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with...

    Authors: Maxwell J. Gelkopf, Iva Avramov, Richelle Baddeliyanage, Ivana Ristevski, Sarah A. Johnson, Kaitlyn Flegg and Helen Dimaras
    Citation: Research Involvement and Engagement 2020 6:7
  26. Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients’ needs. Though PPI is increasingly evident in clinical and health services researc...

    Authors: Rebecca Birch, Gwenda Simons, Heidi Wähämaa, Catherine M. McGrath, Eva C. Johansson, Diana Skingle, Kerin Bayliss, Bella Starling, Danielle M. Gerlag, Christopher D. Buckley, Rebecca J. Stack, Karim Raza and Marie Falahee
    Citation: Research Involvement and Engagement 2020 6:6
  27. Mental health, substance use/addiction and violence (MSV) are important issues affecting the well-being of Indigenous People in Canada. This paper outlines the protocol for a research-to-action program called ...

    Authors: Melody Morton Ninomiya, Ningwakwe (Priscilla) George, Julie George, Renee Linklater, Julie Bull, Sara Plain, Kathryn Graham, Sharon Bernards, Laura Peach, Vicky Stergiopoulos, Paul Kurdyak, Gerald McKinley, Peter Donnelly and Samantha Wells
    Citation: Research Involvement and Engagement 2020 6:5
  28. Community engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased b...

    Authors: Chelsea A. Pelletier, Anne Pousette, Kirsten Ward and Gloria Fox
    Citation: Research Involvement and Engagement 2020 6:3
  29. Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how b...

    Authors: Sisay Abayneh, Heidi Lempp and Charlotte Hanlon
    Citation: Research Involvement and Engagement 2020 6:2
  30. Despite increasing interest in patient involvement in health care research, researchers may be uncertain about the benefits of involving patients in the design and conduction of clinical studies. We aimed to e...

    Authors: Marianne Vogsen, Susanne Geneser, Marie Lykke Rasmussen, Mogens Hørder and Malene Grubbe Hildebrandt
    Citation: Research Involvement and Engagement 2020 6:1
  31. Accessing support services for depression has been historically difficult given the societal stigma that exists regarding the condition. Recent advances in digital technologies continue to be postulated as a p...

    Authors: Paul Best, Tracey McConnell, Gavin Davidson, Jennifer Badham and Ruth D. Neill
    Citation: Research Involvement and Engagement 2019 5:40
  32. Research is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather th...

    Authors: Jill D. Nault Connors, Marshall J. Conley and Laura S. Lorenz
    Citation: Research Involvement and Engagement 2019 5:39
  33. Patient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research. While researchers who employed PPI mainly report on the positive aspects, in practice PP...

    Authors: Imke Schilling, Heike Behrens, Jutta Bleidorn, Ildikó Gágyor, Claudia Hugenschmidt, Hannah Jilani, Guido Schmiemann and Ansgar Gerhardus
    Citation: Research Involvement and Engagement 2019 5:38
  34. Although it is generally accepted that engaging with members of the public contributes to more actionable and relevant research, there are a limited number of reported evaluations of community engagement initi...

    Authors: Chelsea Pelletier, Anne Pousette, Gloria Fox, Robin Keahey, Kirsten Ward, Guy Faulkner, Drona Rasali and Sandra Allison
    Citation: Research Involvement and Engagement 2019 5:37
  35. The study is based on a national cluster randomized trial investigating the effect of electronic patient-reported outcomes (ePRO) on treatment outcomes in breast cancer patients receiving adjuvant chemotherapy...

    Authors: Christina Witt Bæksted, Aase Nissen, Ann S. Knoop and Helle Pappot
    Citation: Research Involvement and Engagement 2019 5:36
  36. The importance of patient and public involvement (PPI) in the design and conduct of health research projects is gaining widespread recognition; however, it is still a developing area. Furthermore, PPI in metho...

    Authors: Alice M. Biggane, Maria Olsen and Paula R. Williamson
    Citation: Research Involvement and Engagement 2019 5:35
  37. The value and importance of qualitative research and Patient and Public Involvement (PPI) for developing complex health interventions is widely recognised. However, there is often confusion between the two, wi...

    Authors: Ingrid Muller, Miriam Santer, Leanne Morrison, Kate Morton, Amanda Roberts, Cathy Rice, Marney Williams and Lucy Yardley
    Citation: Research Involvement and Engagement 2019 5:34
  38. Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in thei...

    Authors: Willemijn M. den Oudendammer, Jacquelien Noordhoek, Rebecca Y. Abma-Schouten, Lieke van Houtum, Jacqueline E. W. Broerse and Christine W. M. Dedding
    Citation: Research Involvement and Engagement 2019 5:33
  39. Patient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for ...

    Authors: Rachel Matthews, Meerat Kaur, Catherine French, Alison Baker and Julie Reed
    Citation: Research Involvement and Engagement 2019 5:31
  40. Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually de...

    Authors: Leah Holmes, Katharine Cresswell, Susannah Williams, Suzanne Parsons, Annie Keane, Cassie Wilson, Safina Islam, Olivia Joseph, Jahanara Miah, Emily Robinson and Bella Starling
    Citation: Research Involvement and Engagement 2019 5:30
  41. Involving patients in scientific research has been shown to improve the relevance of the research, as well as its quality and applicability. Harteraad, the Dutch patient organization for people with cardiovasc...

    Authors: Eva Vroonland, Inge Schalkers, Daphne Bloemkolk and Christine Dedding
    Citation: Research Involvement and Engagement 2019 5:29
  42. The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such r...

    Authors: Leah K. Crockett, Carolyn Shimmin, Kristy D. M. Wittmeier and Kathryn M. Sibley
    Citation: Research Involvement and Engagement 2019 5:28
  43. Some previous researchers (Locock et al) have written about what may be the best way for public contributors to be involved in data analysis in research projects. Their experience has been that giving public c...

    Authors: Marney Williams, Mike Etkind, Fran Husson, Della Ogunleye and John Norton
    Citation: Research Involvement and Engagement 2019 5:27

    The original article was published in Research Involvement and Engagement 2019 5:1

    The Letter to this article has been published in Research Involvement and Engagement 2019 5:26

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