Abstract
Background: Patient, public, consumer, and community (P2C2) engagement in organization-, community-, and systemlevel healthcare decision-making is increasing globally, but its formal evaluation remains challenging. To define a taxonomy of possible P2C2 engagement metrics and compare existing evaluation tools against this taxonomy, we conducted a systematic review. Methods: A broad search strategy was developed for English language publications available from January 1962 through April 2015 in PubMed, Embase, Sociological s, PsycINFO, EconLit, and the gray literature. A publication was excluded if: (1) the setting was not healthcare delivery (ie, we excluded non-health sectors, such as urban planning; research settings; and public health settings not involving clinical care delivery); (2) the P2C2 engagement was episodic; or (3) the concept of evaluation or possible evaluation metrics were absent. To be included as an evaluation tool, publications had to contain an evaluative instrument that could be employed with minimal modification by a healthcare organization. Results: A total of 199 out of 3953 publications met exclusion and inclusion criteria. These were qualitatively analyzed using inductive content analysis to create a comprehensive taxonomy of 116 possible metrics for evaluating P2C2 engagement. 44 outcome metrics were grouped into three domains (internal, external, and aggregate outcomes) that included six subdomains: impact on engagement participants, impact on services provided by the healthcare organization, impact on the organization itself, influence on the broader public, influence on population health, and engagement cost-effectiveness. The 72 process metrics formed four domains (direct process metrics; surrogate process metrics; aggregate process metrics; and preconditions for engagement) that comprised sixteen subdomains. We identified 23 potential tools for evaluating P2C2 engagement. The identified tools were published between 1973-2015 and varied in their coverage of the taxonomy, methodology used (qualitative, quantitative, or mixed), and intended evaluators (organizational leaders, P2C2 participants, external evaluators, or some combination). Parts of the metric taxonomy were absent from all tools. Conclusions: By comprehensively mapping potential outcome and process metrics as well as existing P2C2 engagement tools, this review supports high-quality P2C2 engagement globally by informing the selection of existing evaluation tools and identifying gaps where new tools are needed. Systematic Review Registration: PROSPERO registration number CRD42015020317.
Highlights
Ensuring that individuals and communities are engaged in healthcare decision-making is widely regarded as a requirement of patient centered care
Overview of the Included Publications We identified 199 eligible publications, which were qualitatively analyzed to create a taxonomy of possible metrics of P2C2 engagement in healthcare organization, community, and system-level decision-making
Results of Coding Evaluation Tools According to the Taxonomy Outcome Metrics Among 23 identified tools, 13 included at least one question or item coded as an outcome of P2C2 engagement (Table 2)
Summary
Ensuring that individuals and communities are engaged in healthcare decision-making is widely regarded as a requirement of patient centered care. One part of engagement, enshrined as a right of all people in the 1978 Declaration of Alma-Ata,[1] requires engaging patients in their own individual medical decisions and in the design and implementation of healthcare services.[2,3] This type of engagement is occurring globally. Public engagement in health sector priority-setting has been mandated or promoted in low- and middle-income countries.[19,20,21,22] Despite increasing attention to patient engagement in the design and implementation of healthcare services, there is both a greater need for formal engagement evaluation[23] and little agreement on how to do so. Existing how-to guides suggest that patient engagement can contribute positively to
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