PT  - JOURNAL ARTICLE
AU  - Clayon B Hamilton
AU  - Maryam Dehnadi
AU  - M Elizabeth Snow
AU  - Nancy Clark
AU  - Michelle Lui
AU  - Janet McLean
AU  - Hussein Mamdani
AU  - Allison L Kooijman
AU  - Vikram Bubber
AU  - Tammy Hoefer
AU  - Patients as Partners Team
AU  - Linda C Li
TI  - Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: a scoping review
AID  - 10.1136/bmjopen-2021-050208
DP  - 2021 Oct 01
TA  - BMJ Open
PG  - e050208
VI  - 11
IP  - 10
4099  - http://bmjopen.bmj.com/content/11/10/e050208.short
4100  - http://bmjopen.bmj.com/content/11/10/e050208.full
SO  - BMJ Open2021 Oct 01; 11
AB  - Objective To identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems.Methods We conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme.Results Of 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness.Conclusions The 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.Data are available upon reasonable request.