Background
Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.
Objective
The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts.
Search Strategy, Inclusion Criteria, Data Extraction and Synthesis
We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data.
Main Results
We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement.
Discussion and Conclusions
Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
The authors present a case of severe megaloblastic anemia and neurologic damage due to vitamin B12 deficiency in a 6-month-old infant. The cause of the vitamin deficiency was a maternal dietary deficiency because of a strict vegetarian diet and prolonged breast-feeding. The importance of early recognition of significant maternal vitamin B12 deficiency during pregnancy and lactation in vegetarians is emphasized so that appropriate supplementation can be given and irreversible neurologic damage in the infant prevented.
Responding empathically when patients express negative emotion was associated with less patient anxiety and higher ratings of communication but not longer encounter length.
Background
There are currently no evidence-based guidelines that provide standardized criteria for the discharge of COVID-19 patients from the hospital.
Objective
To address this gap in practice guidance, we reviewed published guidance and collected discharge protocols and procedures to identify and synthesize common practices.
Design
Rapid review of existing guidance from US and non-US public health organizations and professional societies and qualitative review using content analysis of discharge documents collected from a national sample of US academic medical centers with follow-up survey of hospital leaders
Setting and Participants
We reviewed 65 websites for major professional societies and public health organizations and collected documents from 22 Academic Medical Centers (AMCs) in the US participating in the HOspital MEdicine Reengineering Network (HOMERuN).
Results
We synthesized data regarding common practices around 5 major domains: (1) isolation and transmission mitigation; (2) criteria for discharge to non-home settings including skilled nursing, assisted living, or homeless; (3) clinical criteria for discharge including oxygenation levels, fever, and symptom improvement; (4) social support and ability to perform activities of daily living; (5) post-discharge instructions, monitoring, and follow-up.
Limitations
We used streamlined methods for rapid review of published guidance and collected discharge documents only in a focused sample of US academic medical centers.
Conclusion
AMCs studied showed strong consensus on discharge practices for COVID-19 patients related to post-discharge isolation and transmission mitigation for home and non-home settings. There was high concordance among AMCs that discharge practices should address COVID-19-specific factors in clinical, functional, and post-discharge monitoring domains although definitions and details varied.
Supplementary Information
The online version contains supplementary material available at 10.1007/s11606-021-06711-x.
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