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Research Involvement and Engagement

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https://www.readbyqxmd.com/read/30002875/inverting-the-patient-involvement-paradigm-defining-patient-led-research
#1
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
https://www.readbyqxmd.com/read/30002874/using-qualitative-research-perspectives-to-inform-patient-engagement-in-research
#2
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
https://www.readbyqxmd.com/read/29992044/using-patient-and-public-involvement-to-improve-the-research-design-and-funding-application-for-a-project-aimed-at-fostering-a-more-collaborative-approach-to-the-nhs-health-check-the-caviar-project-better-care-via-improved-access-to-records
#3
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
https://www.readbyqxmd.com/read/29983994/sharpening-the-focus-differentiating-between-focus-groups-for-patient-engagement-vs-qualitative-research
#4
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
https://www.readbyqxmd.com/read/29850029/the-extent-quality-and-impact-of-patient-and-public-involvement-in-primary-care-research-a-mixed-methods-study
#5
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
https://www.readbyqxmd.com/read/29796308/the-prevalence-of-patient-engagement-in-published-trials-a-systematic-review
#6
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
https://www.readbyqxmd.com/read/29785283/reporting-and-appraising-the-context-process-and-impact-of-ppi-on-contributors-researchers-and-the-trial-during-a-randomised-controlled-trial-the-3d-study
#7
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
https://www.readbyqxmd.com/read/29744131/taking-patient-and-public-involvement-online-qualitative-evaluation-of-an-online-forum-for-palliative-care-and-rehabilitation-research
#8
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: www.csipublicinvolvement.co.uk. 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
https://www.readbyqxmd.com/read/29657835/what-does-patient-engagement-mean-for-canadian-national-transplant-research-program-researchers
#9
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
https://www.readbyqxmd.com/read/29619246/enhancing-the-incorporation-of-the-patient-s-voice-in-drug-development-and-evaluation
#10
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
https://www.readbyqxmd.com/read/29600000/service-user-reflections-on-the-impact-of-involvement-in-research
#11
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
https://www.readbyqxmd.com/read/29560275/advancing-patient-engagement-youth-and-family-participation-in-health-research-communities-of-practice
#12
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
https://www.readbyqxmd.com/read/29507772/defining-and-evaluating-novel-procedures-for-involving-patients-in-core-outcome-set-research-creating-a-meaningful-long-list-of-candidate-outcome-domains
#13
Harriet Smith, Adele Horobin, Kathryn Fackrell, Veronica Colley, Brian Thacker, Deborah A Hall
Plain English summary: Outcome domains are aspects of a condition that matter to patients and clinicians and can be measured to assess treatment effects. For tinnitus, examples include 'tinnitus loudness' and 'ability to concentrate'. This study focuses on the first stage of agreeing which outcome domains should be measured in all clinical trials of tinnitus. Crucially, it involves identifying outcome domains, prior to a voting process. This article describes how we effectively involved patients in that study design process, and reflects on the impact of their input...
2018: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29507771/tailoring-and-field-testing-the-use-of-a-knowledge-translation-peer-support-shared-decision-making-strategy-with-first-nations-inuit-and-m%C3%A3-tis-people-making-decisions-about-their-cancer-care-a-study-protocol
#14
Janet Jull, Maegan Mazereeuw, Amanada Sheppard, Alethea Kewayosh, Richard Steiner, Ian D Graham
Plain English summary: Tailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.First Nations, Inuit and Métis (FNIM) people face higher risks for cancer compared to non-FNIM populations. They also face cultural barriers to health service use. Within non-FNIM populations an approach to health decision making, called shared decision making (SDM), has been found to improve the participation of people in their healthcare...
2018: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29485144/correction-to-abstracts-from-the-nihr-involve-conference-2017
#15
Elspeth Mathie, Helena Wythe, Diane Munday, Paul Millac, Graham Rhodes, Nick Roberts, Jean Simpson, Nat Barden, Penny Vicary, Amander Wellings, Fiona Poland, Julia Jones
[This corrects the article DOI: 10.1186/s40900-017-0075-x.].
2018: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29449962/patient-and-public-involvement-in-reducing-health-and-care-research-waste
#16
REVIEW
Virginia Minogue, Mary Cooke, Anne-Laure Donskoy, Penny Vicary, Bill Wells
Plain English summary: As much as 85 % of health research is believed to be wasted because it is not published or reported, the design is poor or does not consider what is already known in the topic area. Although a great deal of work has been done in the UK to reduce research waste, the role of patients and the public has not been discussed.This paper describes a survey, on the role of patients in reducing research waste, which was carried out as part of a larger piece of work on reducing waste in healthcare...
2018: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29445521/a-method-for-co-creation-of-an-evidence-based-patient-workbook-to-address-alcohol-use-when-quitting-smoking-in-primary-care-a-case-study
#17
Nadia Minian, Aliya Noormohamed, Laurie Zawertailo, Dolly Baliunas, Norman Giesbrecht, Bernard Le Foll, Jürgen Rehm, Andriy Samokhvalov, Peter L Selby
Plain English summary: The purpose of this paper is to describe a patient engagement event designed to create an educational workbook with smokers who drink alcohol at harmful levels. The goal was to create a workbook that combined scientific evidence with patients' values, preferences, and needs. Fourteen adult smokers who drink alcohol were invited to the Centre for Addiction and Mental Health (CAMH) to take part in a four-hour event to help design the workbook with the CAMH research team...
2018: Research involvement and engagement
https://www.readbyqxmd.com/read/29423276/finding-and-engaging-patients-and-the-public-to-work-collaboratively-on-an-acute-infection-microbiology-research-public-panel
#18
Sally Grier, David Evans, Andy Gibson, Teh Li Chin, Margaret Stoddart, Michele Kok, Richard Campbell, Val Kenny, Alasdair MacGowan
Plain English summary: In 2015 a microbiology team in Bristol joined a European research project that aims to develop new antibiotics to fight drug resistant infections. The microbiology team were convinced of the benefits of patient and public involvement, but had found it difficult to find former patients to work with on earlier microbiology research. This paper describes how the team overcame this challenge to successfully recruit a PPI panel to develop PPI within the European project...
2018: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29416879/establishing-research-priorities-relating-to-the-long-term-impact-of-tia-and-minor-stroke-through-stakeholder-centred-consensus
#19
Grace M Turner, Ruth Backman, Christel McMullan, Jonathan Mathers, Tom Marshall, Melanie Calvert
Plain English summary: What is the problem and why is this important? Mini-strokes are similar to full strokes, but symptoms last less than 24 h. Many people (up to 70%) have long-term problems after a mini-stroke, such as anxiety; depression; problems with brain functioning (like memory loss); and fatigue (feeling tired). However, the current healthcare pathway only focuses on preventing another stroke and care for other long-term problems is not routinely given. Without proper treatment, people with long-term problems after a mini-stroke could have worse quality of life and may find it difficult to return to work and their social activities...
2018: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29387453/advancing-care-for-family-caregivers-of-persons-with-dementia-through-caregiver-and-community-partnerships
#20
Carole L White, Kristen J Overbaugh, Carolyn E Z Pickering, Bridgett Piernik-Yoder, Debbie James, Darpan I Patel, Frank Puga, Lark Ford, James Cleveland
Background: There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers...
2018: Research Involvement and Engagement
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