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Research Involvement and Engagement

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https://www.readbyqxmd.com/read/29744131/taking-patient-and-public-involvement-online-qualitative-evaluation-of-an-online-forum-for-palliative-care-and-rehabilitation-research
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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
#11
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
#12
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
#13
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
https://www.readbyqxmd.com/read/29276627/patient-and-public-involvement-in-health-literacy-interventions-a-mapping-review
#14
Stephanie Howard Wilsher, Julii Brainard, Yoon Loke, Charlotte Salter
Plain English summary: If people can read, understand and act on health information to better their health and reduce illness, they are thought to have "adequate" health literacy. Poor health literacy can mean people are less able to access health care and manage their health. Health literacy tends to worsen as adults get older, and is especially poor in adults age 65 and over. Ideally, health literacy interventions target people before age 65, to establish good skills and habits before people have many health problems associated with ageing...
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29271973/correction-to-understanding-plain-english-summaries-a-comparison-of-two-approaches-to-improve-the-quality-of-plain-english-summaries-in-research
#15
Emma Kirkpatrick, Wendy Gaisford, Elaine Williams, Elizabeth Brindley, Doreen Tembo, David Wright
[This corrects the article DOI: 10.1186/s40900-017-0064-0.].
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29270313/using-a-community-engaged-research-cenr-approach-to-develop-and-pilot-a-photo-grid-method-to-gain-insights-into-early-child-health-and-development-in-a-socio-economic-disadvantaged-community
#16
Emma Lowrie, Rachel Tyrrell-Smith
Plain English summary: This paper reports on the use of a Community-Engaged Research (CEnR) approach to develop a new research tool to involve members of the community in thinking about priorities for early child health and development in a deprived area of the UK. The CEnR approach involves researchers, professionals and members of the public working together during all stages of research and development.Researchers used a phased approach to the development of a Photo Grid tool including reviewing tools which could be used for community engagement, and testing the new tool based on feedback from workshops with local early years professionals and parents of young children...
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29238613/public-involvement-could-usefully-inform-ethical-review-but-rarely-does-what-are-the-implications
#17
Kristina Staley, Jim Elliott
Plain English summary: Researchers carrying out research in the NHS in England have to obtain approval for their study from an NHS Research Ethics Committee (REC). Involving the public in research helps to ensure studies are ethically acceptable to the people taking part, and therefore supports the REC review. The form used by RECs asks researchers to describe any involvement that has taken place before the review or any planned for the future. We analysed researchers' reports of involvement in 2748 applications to RECs in 2014, to assess how well their approaches to involvement are informing the review process...
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29238612/co-creation-of-a-digital-tool-for-the-empowerment-of-parents-of-children-with-physical-disabilities
#18
M W Alsem, K M van Meeteren, M Verhoef, M J W M Schmitz, M J Jongmans, J M A Meily-Visser, M Ketelaar
Plain English summary: Parents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on different topics. It is sometimes hard for them to get the right information at the right moment, and to ask the right questions to physicians and other healthcare professionals. In order to develop a digital tool to help parents formulate questions and find information, we thought it would be crucial to work together in a process of co-creation with parents, researchers, IT-specialists and healthcare professionals...
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29225922/using-participatory-learning-action-pla-research-techniques-for-inter-stakeholder-dialogue-in-primary-healthcare-an-analysis-of-stakeholders-experiences
#19
T de Brún, M O'Reilly-de Brún, E Van Weel-Baumgarten, N Burns, C Dowrick, C Lionis, C O'Donnell, F S Mair, M Papadakaki, A Saridaki, W Spiegel, C Van Weel, M Van den Muijsenbergh, A MacFarlane
Plain English summary: It is important for health care workers to know the needs and expectations of their patients. Therefore, service users have to be involved in research. To achieve a meaningful dialogue between service users, healthcare workers and researchers, participatory methods are needed. This paper describes how the application of a specific participatory methodology, Participatory Learning and Action (PLA) can lead to such a meaningful dialogue. In PLA all stakeholders are regarded as equal partners and collaborators in research...
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29214056/strength-in-numbers-an-international-consensus-conference-to-develop-a-novel-approach-to-care-delivery-for-young-adults-with-type-1-diabetes-the-d1-now-study
#20
M C O'Hara, L Hynes, M O'Donnell, C Keighron, G Allen, A Caulfield, C Duffy, M Long, M Mallon, M Mullins, G Tonra, M Byrne, S F Dinneen
Plain English summary: Many young adults with type 1 diabetes struggle with the day-to-day management of their condition. They often find it difficult to find the time to attend their clinic appointments and to meet with their diabetes healthcare team. Young adults living with type 1 diabetes are not routinely involved in research that may help improve health services other than being invited to take part in studies as research participants. A 3-day international conference was held in Galway in June 2016 called "Strength In Numbers: Teaming up to improve the health of young adults with type 1 diabetes"...
2017: Research Involvement and Engagement
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