Patient stakeholder engagement in research: a narrative review to describe foundational principles and best practice activities
JD Harrison, AD Auerbach, W Anderson… - Health …, 2019 - Wiley Online Library
Background Health research is evolving to include patient stakeholders (patients, families
and caregivers) as active members of research teams. Frameworks describing the …
and caregivers) as active members of research teams. Frameworks describing the …
Patient and public engagement in integrated knowledge translation research: are we there yet?
Plain English summary There have been many attempts to improve how healthcare services
are developed and delivered. Despite this, we know that there are many gaps and …
are developed and delivered. Despite this, we know that there are many gaps and …
Patient engagement in research: early findings from the Patient-Centered Outcomes Research Institute
LP Forsythe, KL Carman, V Szydlowski, L Fayish… - Health …, 2019 - healthaffairs.org
Charged with ensuring that research produces useful evidence to inform health decisions,
the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage …
the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage …
An empirically based conceptual framework for fostering meaningful patient engagement in research
Background Patient engagement in research (PEIR) is promoted to improve the relevance
and quality of health research, but has little conceptualization derived from empirical data …
and quality of health research, but has little conceptualization derived from empirical data …
Using qualitative health research methods to improve patient and public involvement and engagement in research
Plain English summary Patient engagement (or patient and public involvement) in health
research is becoming a requirement for many health research funders, yet many …
research is becoming a requirement for many health research funders, yet many …
What constitutes meaningful engagement for patients and families as partners on research teams?
A Black, K Strain, C Wallsworth… - Journal of health …, 2018 - journals.sagepub.com
Objective There is growing emphasis on health care organizations to ensure that lay people
are meaningfully engaged as partners on research teams. Our aim was to explore the …
are meaningfully engaged as partners on research teams. Our aim was to explore the …
Researchers, patients, and other stakeholders' perspectives on challenges to and strategies for engagement
A Heckert, LP Forsythe, KL Carman, L Frank… - Research Involvement …, 2020 - Springer
Background There is growing interest in patient and stakeholder engagement in research,
yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes …
yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes …
A review and synthesis of frameworks for engagement in health research to identify concepts of knowledge user engagement
JE Jull, L Davidson, R Dungan, T Nguyen… - BMC medical research …, 2019 - Springer
Background Engaging those who influence, administer and/or who are active users
(“knowledge users”) of health care systems, as co-producers of health research, can help to …
(“knowledge users”) of health care systems, as co-producers of health research, can help to …
Lived experience researchers partnering with consumers and carers to improve mental health research: Reflections from an Australian initiative
M Banfield, R Randall, M O'Brien… - … journal of mental …, 2018 - Wiley Online Library
Consumer and carer involvement in mental health research is a growing and developing
field. Whilst there has been policy and in‐principle support for such involvement from …
field. Whilst there has been policy and in‐principle support for such involvement from …
[HTML][HTML] Relapse prevalence, symptoms, and health care engagement: patient insights from the Multiple Sclerosis in America 2017 survey
TA Nazareth, AR Rava, JL Polyakov, EN Banfe… - Multiple sclerosis and …, 2018 - Elsevier
Background Underestimation of relapse in multiple sclerosis (MS) is detrimental to the
patient as well as to their relationship with their MS healthcare professional (HCP). Objective …
patient as well as to their relationship with their MS healthcare professional (HCP). Objective …