Patient Empowerment and Involvement in Research.
Sign Up to like & getrecommendations! Published in 2017 at "Advances in experimental medicine and biology"
DOI: 10.1007/978-3-319-67144-4_15
Abstract: Patients with rare diseases often face difficulties in clinical care due to the low prevalence of their diseases and the resulting healthcare professionals' lack of expertise. Valid and standardized guidelines for clinical management are also… read more here.
Keywords: research; rare diseases; involvement research; empowerment involvement ... See more keywords
Patient and Public Involvement in research: A journey to co-production.
Sign Up to like & getrecommendations! Published in 2021 at "Patient education and counseling"
DOI: 10.1016/j.pec.2021.07.021
Abstract: The public and patients can be powerful sensors for shaping and powering healthcare research. They are joining research teams as investigators and collaborators to co-produce evidence for the practical use of interventions in clinical practice.… read more here.
Keywords: research; production; involvement research; patient public ... See more keywords
Not just a ‘tick box exercise’ – meaningful public involvement in research
Sign Up to like & getrecommendations! Published in 2018 at "International Journal of Pharmacy Practice"
DOI: 10.1111/ijpp.12450
Abstract: How many researchers, on completing their funding application documents, suddenly realise that they should have involved patients and public members earlier in the process? In the UK, INVOLVE is the national advisory group funded by… read more here.
Keywords: research; involvement research; health; involvement ... See more keywords
National Standards for Public Involvement in Research: missing the forest for the trees
Sign Up to like & getrecommendations! Published in 2018 at "Journal of Medical Ethics"
DOI: 10.1136/medethics-2018-105088
Abstract: Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’… read more here.
Keywords: research; involvement research; standards public; national standards ... See more keywords
The adult in the room: The push and pull of parental involvement in research with children
Sign Up to like & getrecommendations! Published in 2023 at "Childhood"
DOI: 10.1177/09075682231176899
Abstract: Parental involvement in research where children are the primary study participants is frequent but under-analyzed. To understand such dynamics in research with children, we examined children’s (ages 8–14) interactions with parents who came in and… read more here.
Keywords: research children; involvement; involvement research; push ... See more keywords
Designing a tool to support patient and public involvement in research projects: the Involvement Matrix
Sign Up to like & getrecommendations! Published in 2020 at "Research Involvement and Engagement"
DOI: 10.1186/s40900-020-00188-4
Abstract: Background Interest in patient involvement in research is growing. Research should rather be ‘with’ or ‘by’ patients, and not only be ‘about’ or ‘for’ patients. Patients’ active involvement in research is not self-evident and special… read more here.
Keywords: research; involvement research; tool; involvement matrix ... See more keywords
Awareness of and attitudes towards public involvement in research on ageing and health among older people in Sweden
Sign Up to like & getrecommendations! Published in 2022 at "PLoS ONE"
DOI: 10.1371/journal.pone.0269993
Abstract: Background While the importance of involving older people in research is increasingly acknowledged, quantitative studies exploring the perspectives of larger samples of older people who take an active role in research on ageing and health… read more here.
Keywords: health; public involvement; involvement; involvement research ... See more keywords