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Research Involvement and Engagement

Sophie Staniszewska, Richard Stephens, Ella Flemyng
Plain English summary: Peer review is a well-established part of academic publishing. Its function is to assess the quality of a manuscript before publication in a journal. Research involvement and Engagement is the world's first co-produced journal dedicated to developing the evidence base of patient and public involvement and engagement in health and social care research. Alongside traditional academic peer review we also involve other key stakeholders, including patients, carers, the public, policy makers, funders and practitioners...
2018: Research Involvement and Engagement
Anna Maria Chudyk, Celeste Waldman, Tara Horrill, Lisa Demczuk, Carolyn Shimmin, Roger Stoddard, Serena Hickes, Annette S H Schultz
Plain English summary: Patient engagement in research is an emerging approach that involves active and meaningful collaboration between researchers and patients throughout all phases of a project, including planning, data collection and analysis, and sharing of findings. To better understand the core features (elements) that underlie patient engagement, it is useful to have a look at models and frameworks that guide its conduct. Therefore, this manuscript aims to present a protocol for a scoping review of models and frameworks of patient engagement in health services research...
2018: Research Involvement and Engagement
Maarten de Wit, Truus Teunissen, Lieke van Houtum, Margriet Weide
Background: Health-research funding organizations are increasingly involving patient representatives in the assessment of grant applications. However, there is no consensus on an appropriate scope or definition of the patient perspective and the eligibility of potential patient reviewers to take on this role. The aim of our study is to develop a consensus-based template for patient reviewers to assess research grant applications from the patients' perspective. We also defined a glossary of terms and definitions to help the patient reviewers in their assessment role...
2018: Research Involvement and Engagement
Clara R Jørgensen, Nanna B Eskildsen, Anna T Johnsen
Background: This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context...
2018: Research Involvement and Engagement
Eva Rames Nissen, Vibeke Bregnballe, Mimi Yung Mehlsen, Anne Kathrine Østerby Muldbjerg, Maja O'Connor, Kirsten Elisabeth Lomborg
Plain English summary: The aim of this paper is to present our experiences from a shared working group (SWG) with patient representatives and researchers. The SWG collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and on the planning of an effect study of this intervention.The SWG included five patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant...
2018: Research Involvement and Engagement
Andrea C Bishop, Meghan J Elliott, Christine Cassidy
Plain English summary: As knowledge translation trainee participants, we report on the discussions that took place during the 2017 Knowledge Translation Canada Summer Institute. The theme of the institute was patient-oriented research and patient engagement in research. Trying to move knowledge into health care practice can be difficult. Including patients and families as members of the research team can help to overcome some of these challenges by producing more relevant research designs and results...
2018: Research Involvement and Engagement
Peter Selby, Galina Velikova
Plain English summary: Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires...
2018: Research Involvement and Engagement
Leona M Batten, Indrani Subarna Bhattacharya, Laura Moretti, Joanne S Haviland, Marie A Emson, Sarah E Miller, Monica Jefford, Mairead MacKenzie, Maggie Wilcox, Marie Hyslop, Rachel Todd, Claire F Snowdon, Judith M Bliss
Plain English summary: Breast cancer is a diverse and varied disease. Recent research has shown that the collection of multiple biopsies before surgery can help researchers determine how the cancer is responding to treatment and can predict for long-term outcomes. However biopsies can be uncomfortable, and sometimes clinicians and research teams in hospitals may be reluctant to offer clinical trials requiring several biopsies to patients who have been recently diagnosed with breast cancer...
2018: Research Involvement and Engagement
Laura B Mader, Tess Harris, Sabine Kläger, Ian B Wilkinson, Thomas F Hiemstra
Plain English Summary: Patients usually understand their disease and lifestyle needs better than many medical professionals. They also have important ideas about what research would be most beneficial to their lives, especially on how to manage symptoms in a way that improves daily quality of life. In the UK, the National Institute for Health Research has recognised the value of patient insight, and now requires researchers with public funding to involve patients and the public throughout the research process...
2018: Research Involvement and Engagement
Michelle Phoenix, Tram Nguyen, Stephen J Gentles, Sandra VanderKaay, Andrea Cross, Linda Nguyen
Plain English summary: In Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond the traditional passive participant role. These practices, referred to collectively as 'patient engagement', have raised questions about how to engage patients in the research process. Specifically, researchers have noted a lack of theory underpinning patient engagement and are looking for guidance on how to select patients and engage patients throughout the research process...
2018: Research Involvement and Engagement
Brian McMillan, Sarah Fox, Moira Lyons, Suzy Bourke, Manoj Mistry, Angela Ruddock, Benjamin Brown, Mei Yee Tang, Harm Van Marwijk
Background: Following an initial NHS Health Check appointment, the National Institute for Health and Care Excellence (NICE) suggest patients with QRISK2 scores of ≥10% should be offered advice on lifestyle and the risks and benefits of starting a statin. NICE recommend GPs should ascertain patients' pre-existing knowledge of cardiovascular disease risk, explore health beliefs, assess readiness to change, offer support, and engage family members. Condensing this complex discussion into a short consultation may result in inadequate patient understanding of the benefits of preventive measures...
2018: Research Involvement and Engagement
Nicole Doria, Brian Condran, Leah Boulos, Donna G Curtis Maillet, Laura Dowling, Adrian Levy
Plain English summary: Patient engagement is an opportunity for people with experience of a health-related issue to contribute to research on that issue. The Canadian Strategy for Patient-Oriented Research (SPOR) highlights patient engagement as an important part of health research. Patient engagement, however, is a new concept for many researchers and research ethics boards, and it can be difficult to understand the differences between patient engagement activities and research activities...
2018: Research Involvement and Engagement
Steven Blackburn, Sarah McLachlan, Sue Jowett, Philip Kinghorn, Paramjit Gill, Adele Higginbottom, Carol Rhodes, Fiona Stevenson, Clare Jinks
Plain English summary: In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself...
2018: Research Involvement and Engagement
Dean Fergusson, Zarah Monfaredi, Kusala Pussegoda, Chantelle Garritty, Anne Lyddiatt, Beverley Shea, Lisa Duffett, Mona Ghannad, Joshua Montroy, M Hassan Murad, Misty Pratt, Tamara Rader, Risa Shorr, Fatemeh Yazdi
Plain English summary: With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement?We conducted a review of the published literature looking for trials that report engaging patients in the research...
2018: Research involvement and engagement
Cindy Mann, Simon Chilcott, Katrina Plumb, Edmund Brooks, Mei-See Man
Plain English summary: Including patient and public involvement (PPI) in health research is thought to improve research but it is hard to be clear exactly how it helps. This is because PPI takes many forms, is sometimes only token and is not always reported clearly. This makes it difficult to combine the evidence so that clear conclusions can be reached about the ingredients of successful PPI and what PPI achieves. Previous research that has tried to combine the evidence has led to several guidelines for researchers to use in setting up and reporting PPI...
2018: Research Involvement and Engagement
Lisa Jane Brighton, Sophie Pask, Hamid Benalia, Sylvia Bailey, Marion Sumerfield, Jana Witt, Susanne de Wolf-Linder, Simon Noah Etkind, Fliss E M Murtagh, Jonathan Koffman, Catherine J Evans
Plain English summary: Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it...
2018: Research Involvement and Engagement
Julie Allard, Fabián Ballesteros, Samantha J Anthony, Vincent Dumez, David Hartell, Greg Knoll, Linda Wright, Marie-Chantal Fortin
Plain English summary: In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research...
2018: Research Involvement and Engagement
Meghana Chalasani, Pujita Vaidya, Theresa Mullin
Plain English summary: People living with a condition are uniquely positioned to inform the understanding of the therapeutic context for drug development and evaluation. In 2012, the U.S. Food and Drug Administration (FDA) established the Patient-Focused Drug Development (PFDD) initiative to more systematically obtain the patient perspective on specific diseases and their currently available treatments. PFDD meetings are unique among FDA public meetings, with a format designed to engage patients and elicit their perspectives on two topic areas: (1) the most significant symptoms of their condition and the impact of the condition on daily life; and, (2) their current approaches to treatment...
2018: Research Involvement and Engagement
Jim Gordon, Sue Franklin, Sabrina A Eltringham
Plain English summary: Public involvement can impact on research, on the public who give advice, on the researchers and the research participants. Evaluating impact is an important part of the research process. Two members of a hospital-based patient research panel and our coordinator have written this paper. Our panel covers a range of rehabilitation and palliative services. These services form the "Therapeutics and Palliative Care Directorate". We describe how we worked collaboratively with hospital staff and co-produced questionnaires to evaluate the impact of our involvement...
2018: Research Involvement and Engagement
Roberta L Woodgate, Melanie Zurba, Pauline Tennent
Plain English summary: The involvement of patients in health research has resulted in the development of more effective interventions and policies in healthcare that respond to the needs of healthcare users. This article examines how working with youth and their families as co-researchers in health research communities of practice (CoPs), rather than just as participants, can benefit all involved. Health research (CoPs) promote an environment in which co-researchers have the opportunity to do more than just participate in the data collection phase of the research process...
2018: Research Involvement and Engagement
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