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Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions
Springer Science and Business Media LLC - Tập 9 - Trang 1-11 - 2023
Caroline Elfassy, Lisa Wagner, Johanne Higgins, Kathleen Montpetit, Laurie Snider, Noémi Dahan-Oliel
Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians’ and patients’ perspectives and involvement is a crucial and necessary step. This study sought to determine the most clinically useful items...... hiện toàn bộ
Create to Collaborate: using creative activity and participatory performance in online workshops to build collaborative research relationships
Springer Science and Business Media LLC - Tập 9 - Trang 1-18 - 2023
Alice Malpass, Astrid Breel, Jo Stubbs, Tassos Stevens, Persis-Jadé Maravala, Ellie Shipman, Zoe Banks Gross, Michelle Farr
Creative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to design four online workshops, one on each research priority area: school environments and mental health; wellbeing within the Somali community; air pollution; health data. We aimed to understa...... hiện toàn bộ
What does patient engagement mean for Canadian National Transplant Research Program Researchers?
Springer Science and Business Media LLC - Tập 4 Số 1 - Trang 1-10 - 2018
Allard, Julie, Ballesteros, Fabián, Anthony, Samantha J., Dumez, Vincent, Hartell, David, Knoll, Greg, Wright, Linda, Fortin, Marie-Chantal
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 ...... hiện toàn bộ
Evaluation of the quality of patient involvement in a patient-led analysis of the lived experience of a rare disease
Springer Science and Business Media LLC - Tập 9 - Trang 1-10 - 2023
Dawn Lobban, Jacqui Oliver, Kelly Davio, Kenza Seddik, Veronica Porkess
Patients themselves are best placed to provide insights on the lived experience and to lead the analysis of such insights to bring the patient voice into peer-reviewed literature. In doing so, they can meet the authorship criteria for subsequent research publications. It is important to evaluate patient engagement to identify ways to improve future collaborations. Here, we describe the approach ta...... hiện toàn bộ
Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research
Springer Science and Business Media LLC - Tập 8 Số 1
Samantha Micsinszki, Nadia Tanel, Julia Kowal, Gillian King, Dolly Menna-Dack, Ángel Chú, Michelle Phoenix
Abstract Background Including youth with disabilities and their families as partners in childhood disability research is imperative but can be challenging to do in an authentic and meaningful way. Simulation allows individuals to learn in a controlled environment and provides an opportunity to try n...... hiện toàn bộ
Co-building a patient-oriented research curriculum in Canada
Springer Science and Business Media LLC - Tập 5 - Trang 1-13 - 2019
Tim Bell, Lidewij Eva Vat, Colleen McGavin, Malori Keller, Leah Getchell, Anna Rychtera, Nicolas Fernandez
Foundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of patient-oriented research, the research enterprise, and how to work in a team. The course curriculum was co-developed by a diverse group of people with different lived experiences and rel...... hiện toàn bộ
Patient and public involvement in Paediatric Intensive Care research: considerations, challenges and facilitating factors
Springer Science and Business Media LLC - Tập 2 - Trang 1-16 - 2016
J. C. Menzies, K. P. Morris, H. P. Duncan, J. F. Marriott
Paediatric Intensive Care (PIC) provides care to extremely ill children. Research in this area can be difficult because children are often too sick to discuss being involved in a study and parents are too upset about their child to think about taking part. This makes it even more important that research is well designed. We conducted a review of the literature about involving patients and the publ...... hiện toàn bộ
The consultation of rugby players in co-developing a player health study: feasibility and consequences of sports participants as research partners
Springer Science and Business Media LLC - Tập 3 - Trang 1-14 - 2017
Madeleine A.M. Davies, Edward Balai, Jo Adams, John-Henry Carter, Andrew Judge, Julia L. Newton, Nigel K. Arden
Many funding bodies within the United Kingdom and globally have encouraged public involvement in research. The Department of Health has also called public involvement a sign of good research. Despite the wide acceptance of public involvement improving many aspects of research, from its design to its communication, involvement has varied levels of implementation across different fields of research...... hiện toàn bộ
Imaging in clinical trials: a patient-led questionnaire study to assess impact of imaging regimes on patient participation
Springer Science and Business Media LLC - Tập 6 - Trang 1-7 - 2020
Katherine May, Martin Lee, Monica Jefford, Ana Ribeiro, Alison Macdonald, Veronica Morgan, Marianne Usher, Nandita M. de Souza
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 for patients. This questionnaire study aimed to determine the aspects of imaging that affect a patient’s decision to participate in clinical trials in order to inform the design of future tria...... hiện toàn bộ
Impact of community engagement and social support on the outcomes of HIV-related meningitis clinical trials in a resource-limited setting
Springer Science and Business Media LLC - Tập 6 - Trang 1-7 - 2020
Richard Kwizera, Alisat Sadiq, Jane Frances Ndyetukira, Elizabeth Nalintya, Darlisha Williams, Joshua Rhein, David R. Boulware, David B. Meya
Clinical trials remain the cornerstone of improving outcomes for HIV-infected individuals with cryptococcal meningitis. Community engagement aims at involving participants and their advocates as partners in research rather than merely trial subjects. Community engagement can help to build trust in communities where these trials are conducted and ensure lasting mutually beneficial relationships bet...... hiện toàn bộ
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