Guidance for Engaging Patients in Quality Improvement: A Descriptive Assessment of Published Toolkits

Although patient engagement has the potential to increase the relevance and effectiveness of quality improvement in healthcare, engagement strategies are variable and underutilized. We described the organization, formatting, and content of publicly available toolkits for patient engagement in quality improvement activities, assessing their presentation of the scope, structure, and ethics of patient engagement and mapping the implementation guidance they offered.

Systematic searches were used to identify 41 publicly available toolkits intended to help professionals involved in quality improvement or system redesign engage patients in their work. Our review abstracted and descriptively analyzed these toolkits, focusing on the following areas: (1) the organization and formatting of, and resources included in, toolkits; (2) the scope and structure of patient engagement initiatives; (3) recommendations for implementing patient engagement. Recommendations for implementation were organized and assessed using the Exploration, Preparation, Implementation, and Sustainment framework.

The median length of toolkits reviewed was 33 pages (interquartile range: 20-60). Ten toolkits (24%) were over 50 pages in length. Most toolkits offered detailed advice on tasks in the exploration (4 areas, all represented in >50% of toolkits), preparation (2 areas, 1 of which was represented in 50% of toolkits), and implementation (5 areas, 4 of which were represented in >50% of toolkits) phases of patient engagement. In the preparation phase, toolkits (31; 76%) regularly discussed the need to plan for compensating patient advisors, but few (6 toolkits; 15%) suggested specific amounts. Likewise, activities in the sustainment and ending phases were less commonly discussed, with only 12 toolkits (29%) offering advice on how to conclude a completed patient engagement project. Discussion of potential ethical issues in patient engagement, such as how to obtain informed consent from patients telling their stories to clinicians (4 toolkits; 10%), was also uncommon. Toolkits regularly included additional resources to support implementation, such as flyers (12 toolkits; 29%), sample forms (13 toolkits; 32%), and checklists (18 toolkits; 44%).

Although numerous toolkits for patient engagement exist, their length and complexity may limit their uptake by busy clinician-managers. Opportunities to strengthen available toolkits include improving toolkits' usability and accessibility, providing guidance on ethical considerations, such as how to support patient advisors with concerns or complaints, and offering clear guidelines that match compensation to patient advisors' efforts and expertise.