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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
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...
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
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 ...
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
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...
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
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 new approaches.
The objectives of the research study were to (1) codesign a suite of simulations
and ...
Co-building a patient-oriented research curriculum in Canada
Springer Science and Business Media LLC - Tập 5 - Trang 1-13 - 2019
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...
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
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...
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
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....
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
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...
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
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...
Một đề xuất tích hợp sự tham gia của bệnh nhân và công chúng trong các giai đoạn thu thập và phân tích dữ liệu định tính của một nghiên cứu triển khai trong chăm sóc sức khỏe ban đầu Dịch bởi AI
Springer Science and Business Media LLC - Tập 9 - Trang 1-8 - 2023
Sự tham gia của bệnh nhân và công chúng (PPI) ngày càng được coi là yếu tố thiết
yếu trong nghiên cứu dịch vụ y tế. Có những lập luận đạo đức và luân lý mạnh mẽ
về việc thực hiện PPI chất lượng tốt. Mặc dù đã có sự phát triển hướng dẫn nhằm
giải quyết báo cáo không nhất quán các hoạt động PPI trong nghiên cứu, nhưng
tiến triển trong việc ghi chép các bước thực hiện PPI và ảnh hưởng của nó đến
hướn...
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