Table 1.

Patient and family partnerships in ambulatory quality improvement, by study type

References	Setting	Patient/family partnership activities	Partnership outcomes
Randomized trials
Boivin, Lehoux, Lacombe, et al. [19] /Boivin, Lehoux, Burgers, Grol [37]	Regional Health Authority in Canada	2-day deliberation meetings with patients prioritizing 37 options for community-level chronic care	“At the end of the trial, intervention sites’ priorities identified by patients with professionals were significantly different from control sites’ priorities identified by professionals alone”
Surveys
Han et al. [8]	US PCMH practices	Suggestion box or other ad hoc method; patient and family surveys; qualitative input from individuals or small patient groups through interviews, group meetings, or clinic observations; ongoing participation in QI teams or patient/family advisory councils	More practices used partnership feedback to alert about potential problems vs. seeking input about solutions or improvements
Scholle et al. [9]	US PCMH practices with fewer than 5 physicians	Patients on QI committees or PCMH transformation teams in 15.5% of practices	No specific results reported
Qualitative studies
Browne et al. [14]	Two primary care centers in poor urban Canadian neighborhoods serving marginalized populations	Patients periodically hired part-time to assist with peer-support activities, focus groups and wellness programs; and research (e.g., as interviewers)	“Participatory engagement of patients can take many forms and PHC organizations can play a role in providing a sense of meaningful belongingness, for example, by providing paid or volunteer opportunities including peer support programs”
Caplan et al. [22]	University of Wisconsin primary care delivery system	Patient engagement training program developed during overall redesign efforts included coach and team member curricula, education and step-by-step how-to guides, tools, and templates. Created a 5-level framework for patient involvement, with level 5 being active partnership. Of 47 teams, 58 engaged patients (level-5 number not specified)	“Deepened our conviction that involving patients in the planning, development, and testing of clinical improvements is essential for improving quality and safety”
Carr et al. [26]	9 practices in 2 South-of-England trusts	Patients participated in eight half-day continuing medical education-type workshops over 9 months and facilitated project meetings about back-pain management for primary care teams	Viewed as catalyst for provider/staff behavior change, shifting perspective from medical to biopsychosocial model and increasing likelihood of motivating practice change compared to giving professionals information. Participation-influenced subthemes were “influential stories” and “different perspectives”
Luxford et al. [16]	8 US health care organizations: 5/8 ambulatory	Patient/family advisory committees and board-of-trustee representation, QI committees, employee interview panels and medical executive committees. Activities included involvement in organizational decisions (e.g., service redesign and staff-interview panels) and point-of-care engagement (e.g., partners in care; inclusion in handoffs; 24/7 point of access)	“Interviewees in five out of eight organizations cited the engagement of patients, families and carers as a critical strategy for promoting patient-centered care.” Acute inpatient facilities reported more extensive engagement
Renedo et al. [15]	CLAHRC NWL	CLAHRC NWL envisioned patient participation in QI becoming normal practice across local healthcare context; funded, trained, and supported individual teams of 8–10 multidisciplinary frontline staff from National Health Service organizations conducting QI initiatives. Patients involved in strategy development and ongoing improvement events	Patients developed a sense of belonging and agency in interacting with healthcare professionals:”from being passive recipients of healthcare to becoming active participants in service improvement”
Review articles
Hubbard et al. [41]	Research and care planning efforts involving “people affected by cancer”	Multiple activities including “one-off involvement exercises” and “user involvement partnerships” in policy and planning	No specific empirical findings reported
Morrow et al. 2013 [32]	Mechanisms for partnership around chronic disease care	Advisory groups and patient-experience-based approaches to service design that link providers to community networks and support “perspective sharing” including patient input on agenda	“Experiential knowledge” shapes relevant questions and improvement approaches
Case studies
Angstman et al. [17]	Mayo Clinic, US	“Patient advisory group” (defined as involved in long-term patient-centered processes) in place 5+ years. Twelve members are Mayo patients or parents interested in improving clinic healthcare, volunteered or selected by medical director; others are medical director and administrator. Meets quarterly Mission statement: “To establish a patient advocate forum to gain quality experiences, observations, and suggestions for improvement” Activities: review practice improvement project for depression care management; provide insights on scaling patient action group to entire Rochester, MN primary care practice	Produced more patient-centered, personal-handoff process and associated provider scripting (e.g., from “someone will call you” to “the care manager is an RN who works with me”). Enrollment of patients diagnosed with depression into care management intervention was 96.5%
Baker et al. [29]	US CareSouth outpatient clinics	Educational material design around body mass index after negative initial feedback regarding topic approach; revised pain assessment	“A strong collaborative engagement with the patient is likely necessary to achieve high reliability”
Bitton et al. [27]	Hospital- and community-based primary care teaching practices affiliated with Harvard Medical School	Clinic “transformation teams” encouraged to include patients as core members	“Trainees and patients can be agents of change, and their presence provides added motivation for academic faculty to create and support change”
Coulter and Elwyn [20]	UK policy efforts to involve public in healthcare processes	Community-health councils, proposed statutory patient forums and commission for patient and public involvement and health, patient advisory and liaison services in each trust, annual patient survey	No empirical findings reported
DiGioia et al. [23]	University of Pittsburgh Medical Center, US	6-step patient- and family-centered care methodology including using Codesign Toolkit and Improvement Team to close gaps between current and ideal care experiences	“Refocuses existing resources around the patient and family rather than fitting patients and families around the physician and system. It makes it possible to take any current state and move the care experience toward the ideal—as defined by patients and families”
Fontaine et al. [28]	Minnesota primary care practices	State PCMH certification standard development included patient-advocacy representatives; published standards include “continuous improvement process that included a quality-improvement committee with active patient recruitment and participation”	Patient’s positive experiences with PCMH increased practice leaders’ job satisfaction and trust in the process Process for using patients as PCMH advisors/getting input on PCMH changes from patient partners on change team all correlated significantly (P ≤ 0.01) with practice system change (but not clinical outcomes) [33]
Karazivan et al. [24]	Direction of Collaboration and Patient Partnership at the University of Montreal: Implemented by two primary care teams as of 2014	Accompany clinical teams in implementation of care partnership continuous improvement approach	Results not yet available
Loud et al. [30]; also described in Armstrong et al. [38]	Primary care for people with CKD in UK	Patient advisory group actively participated in QI planning including conference calls with participating practices; designed patient-outreach and support materials	Production of personal case studies and suggestions on explaining CKD from patient perspective to support healthcare professionals in explaining the project to patients. Production of patient-support tools (e.g., CKD information booklet for patients). Co-design and delivery of practitioner training on supporting people with CKD in self-management
Marshall and Nelson [13]	CF Foundation QI, launched in 2002	Patient/family advisory boards at CF care centers, patients/families on clinical practice guidelines committees. Provide input on improvement opportunities	“Enriched the improvement work and motivated the clinicians.” Patients and families received center-level access to outcome measures because “it became clear that it was the right thing to do and it would likely help us accelerate improvement”
Millenson et al. [34]	Mercy Clinic, US; also describes University of Pittsburgh Medical Center’s Patient- and Family-Centered Care [23]	Patient Advisory Workgroups on Quality at every clinic location. Patients comment on ongoing improvement plans. “Patient input sometimes contradicted doctor’s expectations; for example, physicians thought patients would be upset about depression screening, yet not a single patient objected”	Led to study of chronic care self-management showing “patients and clinicians were speaking 2 different languages.” Led to training health coaches in motivational interviewing directly related to patient wants and needs. Training program now institutionalized. Health coach program had financial benefits
Minniti et al. [21]	Collaborative partnerships on the Oregon Medicaid population involving Oregon’s legislature, the OHA, state MAC, Northwest Health Foundation, CareOregon, community groups, care providers	OHA task forces advanced patient-centered primary care homes to explore best practices in patient/family engagement. Individuals and families included as equal members. Developed Patient-Centered Primary Care institute, assembling technical experts, providers, staff, patient advisors, policymakers, academic centers, and other stakeholders to share practice transformation knowledge and resources. CACs required to work with Medicaid-coordinated care organization. CACs have 16–20 members representing a geographic area; at least 51% must be clients or family members receiving Medicaid services. CareOregon established a member advisory council	CareOregon’s advisory council improved internal processes, helped expand dental coverage, and started partnerships in the broader health care community. Developed the Better Together guide to help CareOregon members prepare for clinic visits. Conversations with Oregon legislature influenced establishment of CACs and mandate to include Medicaid beneficiaries in the creation and ongoing operations of Coordinated Care Organizations
Morrison and Dearden [25]	CLAHRC programme for Sheffield. BOSOP	Team used participatory design methods so older patients and staff representatives could collaborate to drive improvements	Creation of design proposals that incorporated patient perspectives and experiences
Roseman et al. [31]/Scanlon et al. [39]	Four US-based programs: one is Oregon’s set of patient advisor programs, (Minniti, above); others are Humboldt county, replicated in South Central Pennsylvania; and Maine Aligning Forces for Quality pilot sites	Humboldt: Patient Partners recruited from patients who completed a local chronic disease self-management program and other sources. Periodic meetings are throughout the year with regular meetings of the full collaborative including providers and staff. Helped develop brochures and evaluate online portals; “serve as role models and working to improve care for all patients have prompted patient partners to become even more active in their own care” PA Partners: adapted Humboldt’s program; focused on patient communication and self-management Maine: All pilot sites had patient advisors. Maine created a Patient Family Leadership Team in 2010 to provide support to pilot practices, since absorbed into other initiatives	Humboldt: “Having the Patient Partners at the table means the reason for this work is front and center for every discussion” South Central PA: Patients more active in their own care; sparking process changes that improve patient and staff satisfaction Maine: “Practice’s patient advisory council has shifted providers’ focus from ‘what’s the matter?’ to ‘what matters to you?’; helped identify practice matters of highest priority to patients; improved patient experience scores
Rubenstein et al. [40]	6 primary care practices in US Veterans Assessment and Improvement Laboratory for Patient-Centered Care	Patient representatives in Quality Councils and five topic-focused workgroups. Only one workgroup included a patient representative	No specific empirical findings reported
Stout and Weeg [18]	Cambridge Health Alliance, US	Process improvement team included 2 patients. Teams charged with spreading innovations between care teams and developing workflows	Input from frontline staff and patients accelerated development of workflow and tools accepted and used by care teams. “This allowed solutions to take hold more rapidly than in previous improvement efforts”

BOSOP better outpatient services for older people, CAC community advisory councils, CF cystic fibrosis, CKD chronic kidney disease, CLAHRC Collaborations for Leadership in Applied Health Research and Care, MAC Medicaid Advisory Committee, NWL Northwest London, OHA Oregon Health Authority, PCMH patient-centered medical home, PHC primary healthcare, QI quality improvement