Table 2 Examples of patient engagement in U.S. healthcare implementation activities by intensity of patient engagement identified in an environmental scan (Goodman and Sanders Thompson, 2017)

Data Source

Patient Engagement Level: Outreach Example (n = 0)^a

Implementers develop, implement, and evaluate strategies to reach target populations. Patients of target population can be engaged as advisors and make key connections. (Non-participation)

n/a

No examples identified

Data Source

Patient Engagement Level: Education Example (n = 0)

Implementers try to educate patients about a topic (e.g., gain audiences for education sessions). (Non-participation)

n/a

No examples identified

Data Source

Patient Engagement Level: Coordination Examples (n = 13)

Implementers gather patients to inform elements of a study or activity. Patients give feedback, which informs implementers’ decisions, but it is the implementers’ responsibility to design and implement the study with no help expected from patients. Implementation activities are strengthened through community outreach, and results are disseminated through community groups and gatekeepers. (Symbolic participation)

Angstman 2009 (Literature article) [41]

Parents of child patients were engaged in a patient advisory group with an interest in improving healthcare for a clinic.

Fehling 2016 (Webinar) [52]

Coordinated a patient engagement group described below in LaChapelle [53].

LaChapelle 2017 (Webinar) [53]

Coordinated a recurring, monthly patient engagement group that consults with researchers (some of whom study implementation). Researchers presented to patient engagement group and get feedback on their research at the idea generation stage through study completion, all the way to the dissemination stage.

Perez Jolles 2017 (Literature article) [43]

For children’s mental health efforts, a parents advisory group met every three months provided input on implementation research protocols, implementation decisions in the context of a study, interpreted findings, and suggested next steps.

Tapp 2017 (Literature article) [44]

Engaged up to sixteen patients on a patient advisory board who participated in one or more of implementation study phases: study design, approving protocols, intervention implementation, study management, data analysis, or dissemination.

Asch 2018 (Webinar) [54]

Involved a patient representative on a grant-funded implementation project series, ranging from identifying current variation in implementation practice to implementing an innovation.

Elwy 2018 (Webinar) [55]

Involved patients through steering committees and advisory boards in guiding development of implementation research and/or disseminating findings from implementation research.

Participant Interview 1

Interviewed and selected patients to serve as advisors and co-investigators on a patient advisory group for quality improvement and implementation initiatives.

Participant Interview 2

Engaged as patients in adapting use of evidence-based psychotherapy in routine care and after treatment, providing feedback via qualitative interviews on feasibility, acceptability, and suggested adaptations of the psychotherapy.

Participant Interview 7

Organized patients who were involved in were implementation studies to attend a national conference and present at talks and station an informational table. The patients’ goals at the conference were to disseminate findings, answer other researchers’ questions in group discussions, and market the value of patient patients in implementation research to more researchers.

Pandhi 2020 (Literature article) [49]

Clinic staff engaged patients in quality improvement activities: 1) Surveyed current patients about preferences for the timing of lab work vis-à-vis scheduled appointments and used their preferences to rework clinic flow. Then, re-surveyed patient satisfaction after changes were implemented. 2) Invited over 100 patients with asthma to a lunch and learn at which the new asthma plans would be explained and patient feedback solicited.

Participant Interview 3

For children’s mental health services, an outside agency helped one clinic form a clinic-family advisory council. This council engaged in workshops to brainstorm projects for improving healthcare delivery at their clinic. Once they selected projects to improve care, clinic staff carried out most steps to implement changes and reviewed these with families from the council periodically. Everyone had input and the clinic director had final approval.

Dickinson 2020 (Literature article) [46]

Clinics created patient and family advisory councils serving each clinic. Main research collaborative trained practice facilitators to work with clinics to support formation and use of patient and family advisory councils.

Data Source

Patient Engagement Level: Cooperation Examples (n = 5)

Implementers ask patients for help instead of only asking for advice. There is some activity on the part of patients in aspects of the project, including recruitment, implementation of interventions, measurement, or interpretation of outcomes. Patients are ongoing partners in decision-making. Patient understanding of implementation and its potential importance is enhanced. (Symbolic participation)

Tapp 2017 (Literature article) [44]

Patient advisory board gave input on dissemination strategies that facilitated implementation of toolkits for patients with asthma.

Elwy 2018 (Webinar) [55]

Patients disseminated information about implementation studies and results to key patient groups and policymakers through social media and conference presentations.

English 2018 (Literature article) [45]

Boot Camp Translation with community members and healthcare professionals involving a one-day retreat, 4-6 conference calls, and 3-4 in-person meetings. They discussed complex health topics and clinical guidelines and decided which ones to focus on for patient education, then produced a set of locally relevant actionable messages and materials to be distributed to patients.

Participant Interview 7

29 patients involved in dissemination of implementation research findings at a national research conference.

Participant Interview 5

Patients who served on a central patient-only advisory board acted independently on behalf of the board by participating as a patient representative on many hospital-wide committees.

Data Source

Patient Engagement Level: Collaboration Examples (n = 7)

Implementers and patients are actively involved in the design and implementation of a study or activity and interpretation of findings. All benefit from working together, including increased capacity of patients to engage in implementation activities. Patients collaborate in decision-making and resource allocation with an equitable balance of power that values their input. (Engaged participation)

Tapp 2017 (Literature article) [44]

Caregiver advocates (proxies to patients) attended project meetings, gave input into patient-centered approaches, assisted with data interpretation and analysis, contributed to dissemination strategies, and were involved in advocacy and policy development.

Participant Interview 1

Patient advisory group members served as co-investigators on implementation projects.

Participant Interview 6

Patients co-created an advisory board partnership with implementation researchers. Patients were research partners, completed human ethics training, listed as key personnel, wrote letters of support for grants, developed name, mission, and purpose of the board, and helped to design, operationalize, and complete implementation research as needed.

Barger 2019 (Literature article) [47]

An external stakeholder advisory group was assembled to inform each phase of a research trial from planning and design to implementation and dissemination. They convened during two web conferences, two patient partner-specific web conferences and one in-person meeting held in conjunction with a larger group meeting. These interactive meetings facilitate regular communication about progress and collaborative problem solving. The team also reached out to specific people over email to request feedback on issues.

Browne 2020 (Literature article) [48]

Patients and family members worked as co-investigators in the development and implementation of a 5-year implementation study. Patients and family members were considered true team experts and full partners, attending regular research team meetings and not serving only in an “advisory” role, but being compensated, providing input on the study design and conduct, and being involved in analyses and dissemination.

Pekmezaris 2020 (Literature article) [50]

Created a community advisory board for implementation of a new intervention, including patients, nonprofessional caregivers, experts in health and social disparities, clinicians, and patient advocates. The role of the community advisory board was to advise the implementation team on all aspects of design, implementation, evaluation, and dissemination over time. This led to discussions on adaptation, usability, and program satisfaction and ensured that the conduct of the project remained patient-oriented.

Gesell 2021 (Literature article) [51]

Created a statewide stakeholder committee to contribute to design, conduct, and dissemination of findings of a multicenter pragmatic clinical trial. The committee added, shaped, and refined intervention components and all patient- and provider-facing materials.

Data Source

Patient Engagement Level: Patient-Centered Example (n = 1)

Patients, caregivers, or advocacy groups assume responsibility for priority setting for activities, control design and implementation of activities, and manage interpretation and dissemination of findings. Implementers use expertise to move these things along, but patients make all major decisions. Systems are in place for patient participation at all engagement levels. Patients can collaborate with equitable balance of power for governance and strong level of accountability to their community. (Engaged participation)

Participant Interview 4

Information gathered in preliminary participatory research with patients was then used by patients to implement a new diabetes self-management program at a community clinic. Patients who worked at the clinic also engaged patients through an advisory board and community organization to determine delivery of the program.

Data Source

Patient Engagement Level: Community-Based Participatory Research (CBPR) Example (n  = 1): CBPR is the population health approach to the “patient-centered engagement” level. Principles of CBPR are applied to implementation, including trust among partners, respect for each partner’s contributions, mutual benefit, and a community-driven collaboration with equitable and shared decision-making. (Engaged participation)

Norman 2013 (Literature article) [42]

Community advisory council consisting of patients developed a CBPR approach to develop and test messages and dissemination strategies for several healthcare issues. The council considered potential projects presented by researchers from the nearby university and selected topics based on community priorities, potential for funding, and potential impact on their community. The council helped with data analysis, interpretation of results, and dissemination of findings. The council was joined by health professionals, health department representatives, hospital administrators, and patients with the health condition of interest.