Introduction

Improving patient and family centeredness is a key component of achieving the healthcare triple aim of improving population health and the care experience, and reducing costs of care [1]. The Affordable Care Act [2] emphasizes patient and family engagement, using the phrase “patient-centered” at least 40 times and supporting the transformation of primary care ambulatory practices to patient-centered medical homes (PCMHs). With the rapid spread of the PCMH model [3], ambulatory practices are seeking ways to redefine relationships with patients and families [4].

Carman et al. [47] developed a framework for better understanding definitions and mechanisms of patient engagement. In this framework, the “partnership” role is substantive, going beyond consultation and involvement and ranging from collaborative clinical visits (direct care level), to co-leading a quality improvement (QI) committee (organizational design and governance), and developing new policies and programs together with patients/families (policy making). In this paper, we focus on organizational design and governance partnerships in ambulatory settings, specifically in QI.

QI in ambulatory care is typically conducted by a team or committee that reviews performance data, identifies improvement opportunities and undertakes QI initiatives [5]. Practices may also have advisory councils that make recommendations on better meeting patient/family needs. Council members share insights and experiences and collaborate with practice leaders and staff on specific QI efforts such as redesigning patient educational materials, creating patient portals for electronic health records or advising on health facility design [6]. We refer to patients and family members serving on QI or advisory committees or in other ambulatory care QI partnerships as “practice advisors.” Practice advisors have first-hand perspectives about patient/family needs and priorities. They provide a fresh view on the challenges that healthcare professionals face in healthcare redesign [7].

Analyses of practices undergoing PCMH transformation show that most obtain patient input, such as through surveys; however, few systematically involve patients and families as QI partners. Practices that actively engage practice advisors report benefits such as better patient/family interactions with physicians and staff, and patient empowerment [8]. However, creating effective patient/family partnerships for ambulatory care improvement is not yet routine.

Practices might hesitate to involve patients and families in improvement because evidence and practical guidance regarding best practices and expected outcomes are lacking [9]. The traditional paradigm of physician autonomy and control in medical decision-making means care is not structured to promote patient and family partnerships [10]. Patient/family QI partnerships can be new territory for practices and patients.

Organizations such as the Institute for Patient- and Family-Centered Care (IPFCC), National Partnership for Women and Families (NPWF), and the Patient-Centered Primary Care Collaborative have been advocating for the inclusion of patients and families in ambulatory care QI. However, additional evidence and guidance are needed to support patient/family partnerships and disseminate their results so they become standard practice in ambulatory care settings.

To provide practices with concrete evidence about meaningfully involving patients and families in QI activities, this paper describes emergent mechanisms and processes that ambulatory care practices use to partner with patients and families in QI including outcomes, facilitators, and challenges. The focus on adult ambulatory care adds to the literature on partnerships in inpatient care and pediatric PCMHs [11].

Methods

We conducted a targeted, narrative literature review to identify partnership activities, outcomes, barriers and challenges. We also elicited first-hand perspectives by conducting a focus group with ambulatory care practice advisors.

Targeted Narrative Review

The questions that the narrative review was designed to answer were: (1) what QI partnership activities exist at ambulatory care practices?; (2) what are the facilitators and challenges of such partnerships?; and (3) what are the outcomes? Article inclusion criteria were: explicit discussion of patient/family partnership activities in practice design; focus on generalist adult ambulatory practice; and publication in English between January 1, 2000 and April 1, 2015. Exclusion criteria were a focus only on direct care (e.g., shared decision-making) or healthcare policy or one-time involvement/consultation. Articles were required to describe specific QI activities at one or more organizations. However, because one objective of the study was to identify existing partnership activities, no restrictions were placed on study design.

PubMed and Ebsco searches identified peer-reviewed articles. Initial search terms were based on team knowledge and key words from seminal articles and reports, with iterative refinement after team review. PubMed was searched for “patient partnership” and variants (collaboration, involvement, participation, engagement, and partner) and “patient advisory council” and variants (group, committee) in titles or abstracts. Ebsco was searched for “patient” and “engagement” in titles only based on initial PubMed results. “Engagement” was used instead of “partnership” because it covers a broader body of research. For both databases, we applied limiting terms for titles or abstracts to focus on ambulatory care (limiting terms: ambulatory care, primary care, family practice, outpatient and medical home) and organizational design and governance (limiting terms: practice, design, redesign, transformation, QI, quality initiative, and process improvement) versus direct care. We reviewed published and unpublished recommendations from our team and project advisors and citations from other articles.

Abstracts of all identified articles were reviewed. When abstracts were not available or lacked sufficient detail, full-text articles were reviewed. Two abstractors (TM, KJ), using structured Excel abstraction forms that captured study design, setting, partnership structure and activities, facilitators and challenges, and results, reviewed two rounds of 50 articles each for training and inter-rater reliability. Concordance improved from the first test set (kappa = 0.38; 95% confidence interval [CI] 0.02–0.75) to the second (kappa = 0.7; 95% CI 0.41–0.98). Disagreements were discussed and resolved. Remaining abstracts were assessed by one reviewer, consulting with a second reviewer only in cases of doubt about articles meeting inclusion criteria.

Focus Group

A telephone-based focus group was conducted in 2014 with a purposive sample of highly experienced practice advisors recommended by IPFCC and NPWF, two organizations that frequently work closely with practice advisors. Participants were eligible if they spoke English, worked as an advisor for at least 6 months, and were not providers or staff members at the advised organization. Of 12 invitees, 10 patient advisors participated, with equal numbers of men and women, aged 35–74 years. Most advised practices that primarily served adults. The group was facilitated by two team members with training and experience in qualitative research and in-person and telephonic focus groups.

The focus group explored the experiences of current practice advisors. A guide (see the supplementary material) was designed to elicit insights from participants’ experience, ideas about how ambulatory practices can prepare to work effectively with patient/family advisors in practice redesign and QI, and advice on encouraging and supporting patients and families in this role.

The focus group was recorded and transcribed. The team reviewed transcripts and discussed major themes. One author (KJ) coded the transcript in Atlas.ti based on a combination of a priori/template codes (drawing on focus group guide questions, e.g., on roles, practice advisor preparation, what went well, suggestions for improvement) and codes that emerged from the data [12]. The primary coder summarized major themes; another author (MM) read transcripts, reviewed the summary, and made adjustments after discussion.

Compliance with Ethics Guidelines

The Group Health human subjects review office determined that the procedures were exempt from IRB review. US regulations pertaining to human subjects research include provisions for exemption from Institutional Review Board review when research involves interviews that are deidentified [46]. Because the focus group occurred over the phone, no consent forms were collected. However, as noted in the focus group guide, participants were informed that participation was voluntary, quotes would be made anonymous, and that their insights will help “in sharing what really works to support patients and families in the role of advisors as improvement partners with health care professionals.” In addition, participants were given an opportunity to ask questions about the procedures before the focus group began.

Results

Narrative Review

The PubMed search identified 810 articles on patient partnerships and the Ebsco search identified 139, with 6 duplicates. We identified 149 additional articles from partners’ suggestions or other citations for a total of 1092 abstracts reviewed. Most exclusions were for a focus on clinical encounters (e.g., shared decision-making), input that did not meet the partnership criteria (e.g., completing a survey), or solely pediatric or inpatient settings.

Thirty articles discussed 26 studies or examples of patient/family partnerships in ambulatory care QI. Overlap between studies included, in particular, patient partnerships in PCMH demonstrations and the Robert Wood Johnson Foundation Aligning Forces for Quality initiatives, which were described in more than one paper. Most articles (17) were case studies (Table 1).

Table 1 Patient and family partnerships in ambulatory quality improvement, by study type
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Most studies reported on patient partnerships in QI or advisory committees, although [13] described patients and families serving on clinical practice guideline committees and [14] reported on periodically hiring patients part-time to assist with peer-support activities, focus groups and wellness programs. Examples of specific activities by patients on standing committees included strategy development [15], staff interviews [16], input on improvement projects [17] and workflow development [18]. In three studies [19–21], practice improvement efforts were part of regional healthcare planning efforts and patient/family partners helped identify local priorities. Many programs incorporated patient/family partners into existing healthcare system functions, such as established committees and program material review. However, several designed new mechanisms specifically for partnership and co-design [19, 22–25].

Many articles reported that patient/family partnerships resulted in process improvements, including staff trainings [22, 26], service redesign [16, 17, 21, 27, 28], and patient materials (e.g., for self-management or new patient orientation) [18, 29–31]. Several articles said patient/family involvement catalyzed practice improvement through “influential stories,” “different perspectives” [26] or “experiential knowledge” [32]. In addition to improving organizational processes, several articles said patient partnerships benefited patients directly by encouraging deeper communication with providers and motivating improvement and management of personal health [14, 15, 31]. No study reported changes in clinical outcomes associated with engaging patient partners, although three [17, 33, 34] reported correlation with improvements in quality-of-care process measures, including health coaching and care coordination.

Promoters and barriers for participating patients/families and practices are summarized in Table 2. For patients and families, facilitators included clearly defined processes, for example length of participation, confidentiality and privacy, training, ongoing communication and facilitation to ensure meaningful participation, and compensation. For practices, implementation facilitators included aligned values, practice cultures and policies. Previous experience or technical assistance on implementing patient partnerships was also cited as helpful.

Table 2 Facilitators and challenges to patient/family partnerships in ambulatory quality improvement
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Practice challenges can involve organizational and staff uncertainty about how to work with patients on QI and benefits of patient partnership. Practices may have concerns about burdening patients and ensuring representative voices. Challenges are compounded by competing demands in healthcare, leading to practices either not considering patient partnerships for QI or perceiving partnerships as work that cannot be accommodated because of resource constraints. Barriers for patients/families included lack of interest, time, training, and comfort with participating or training. Language and cultural differences and lack of trust in the medical system were a challenge for some [8].

Focus Group Findings

Of 10 patient/family practice advisors in the focus group, 8 advised in primary care settings and 2 in outpatient specialty care settings. Eight advised for at least 2–5 years and 2 for more than 5 years. All worked in urban settings: 4 on the West Coast, 2 on the East Coast and Midwest, and 1 each in the Rocky Mountain and Gulf Coast regions. Two were under 55 years, 3 were 55–64 years, and 5 were 65 years or older.

Becoming a practice advisor

Two participants became involved based on family caregiving. One had a child with a serious medical condition: “I got involved because it was so difficult to get access to good care and get quick access because I needed emergency services a lot, that’s why they asked me to do it because I was always in the system.” Several expressed desire and enthusiasm to serve the community and make the healthcare system work better for patients, for example:

“The reason I do these things is because I also receive Medicaid and I am so grateful to have that, that I want to do something to pay back.”

Several participants were invited by their doctors to become practice advisors. Two were retired healthcare professionals. One said: “In my previous life I was a nurse practitioner […] and then after I retired, I became a patient for 20 years so I feel like I have experiences on both sides of the table.”

Commitment and Compensation

Most advisors were part of the practice’s standing QI committee, which typically met monthly for 1–2 h and generally involved from 5 to 15 patient advisors, physicians and staff. One participant reported a system with three advisory councils, one focused on needs of Spanish-speaking patients. Some participated in activities beyond meetings: one worked directly with patients as a patient advocate; another was extensively involved, with activities from legislative testimony to self-management training; and another worked at the clinic level, on a system-wide council and co-chair participating in executive-level meetings with organization leaders. One advisor reported compensation for gas and committee participation time. None received honoraria.

Infrastructure and Support

The committees in which the practice advisors participated were often coordinated by a staff responsible for meeting and communication logistics, sometimes in a dedicated role and sometimes within a larger job. Staff oriented new advisors and supported them between meetings. A staff liaison to follow-up on meeting items was mentioned as important.

Three advisors received training for their role. One received the same orientation as the organization’s employees. One received an individual orientation. Another received ongoing training through conferences and other activities. No other participants reported training. One explained, “We kind of just went by the seat of our pants because all of us have been patients there for many years.”

Advisor Roles and Activities

Patient/family advisor roles included reviewing and providing feedback on written materials for patients (e.g., newsletters, orientation packets) and contributing to the organization and flow of patient visits from a patient-experience perspective. For example:

We focus on improving the patient experience through quality improvement. We focus on educating patients on preventive care and services, and we create in subcommittees with [practice] staff and their health education department, posters, brochures. We’ve done a video on the medical home. And then also I serve on the neighborhood clinic.[…] I’ve observed the lobby, rooming and met with various physicians in the different teams, just observing and asking questions, and from that we’ve created projects and they’ve made tweaks in the way they do their processes in the clinic level.

We actually gave the critical considerations in selection of the [patient electronic health information] portal. So we didn’t decide which portal they were going to use, but we said these are critical questions that should be asked to the developer of the portal about how to comply with the variety of needs.

Other described eliciting patient feedback through comment boxes or one-on-one conversations, advising on executive-level agendas to ensure consideration of patient perspectives, and helping with the practice’s community engagement efforts, including Medicare enrollment and food banks. At one clinic, patient advisors helped develop grants for new initiatives, for example a proposal to acquire clinic furniture for patients and families.

Practice Advisor Perspectives on Benefits and Challenges

Patient advisors indicated that they were involved because their efforts resulted in tangible differences in patients’ care experiences. For example:

[I value being] in a position to address issues with staff and physicians and to serve with other council members so that we can make contributions in this area. We’ve seen quite a few changes that have come out of our participation in this council.

Participants generally described positive experiences working with clinicians and staff with opportunities for bidirectional learning.

Staff, physicians and the people that have been chosen for our council by the doctors really do seem to care and there is a core group that attends regularly and it does provide us with consistency.

So the doctor came and said “all right, how can we assure these patients got their follow-up instructions, got their medications, know how to take their medications, know that we have an appointment, for just even the doctors to know that the patient has been in the hospital and was discharged from the hospital?” So we worked on that, and I think it was very helpful for the staff to bring issues to us that they felt we could help them with.

Challenges and suggestions regarding working with clinicians and staff included the healthcare system’s concern about confidentiality. Some participants said clinicians were not sufficiently aware of or did not spend enough time with patient advisory councils; however, the discussion focused on inviting clinicians and staff to join meetings and opportunities for relationship building. Patient/family partnerships can mean shifting organizational culture, which can be challenging.

I think sometimes the providers were hesitant to talk about some of the things within the clinic.

The materials coming out of the offices are me-oriented. For example we’ll have a publication that says “we now have such and such service” and I’m trying to get the mindset changed so it comes from the patient’s point of view, and it’s a little struggle.

The participants discussed getting broader input from a range of patients and families. Recommendations included incentives and publicity around input opportunities and committee term limits so new people can join.

We don’t have a direct way for patients, if they so choose, to send concerns to the advisory board.

I think everybody deals with how to recruit more people. One meeting we talked about term limits, that got a rise from some of our senior members, but basically that is tied into recruitment. […] We’re consistently seeking new capable people to join the advisory boards.

Discussion

This paper summarizes mechanisms for patient and family partnerships in ambulatory care QI, with outcomes, facilitators and challenges. In addition to involvement in standing QI committees and advisory councils, we identified efforts to include practice advisors in clinical guideline review committees, system transformation initiatives, and innovative practice redesign.

Facilitators for partnering with patients and families for QI in ambulatory settings included, for patients, identifying a shared purpose and clearly defined guidelines for participation. Providing orientation can ensure that advisors feel involved and valued. Addressing confidentiality and ground rules with practice advisors supports open and productive discussion and trusted communication. For practices, facilitators were clearly articulated support and commitment from leadership, including dedicated time and personnel, and comfort with uncertainty and innovation. Partnership implementation can be facilitated through technical assistance, policies that support partnership, and recruitment strategies that identify appropriate participants.

Challenges for patients and families included the time for training and participation. Patients indicated discomfort with speaking for other patients and uncertainty about their role. For practices, barriers included perceptions that partnership time and costs were not feasible given competing priorities. Practices sometimes questioned the value of patient engagement given lack of evidence and experience. Uncertainty about how to work with patients and families in QI and how to act on feedback were also challenges.

Our results offer insights on partnership benefits to practices. Articles and focus group participants reported that partnerships improved processes. Preliminary findings from inpatient experiences support that including patient/family advisors in improvement initiatives may improve processes and potentially even improve quality and safety and reducing costs [35]. With providers under increasing demands, patient/family partnerships might enhance clinician job satisfaction. For example, in an Aligning Forces for Quality initiative, one practitioner remarked, “Engaging patients is the hardest core expectation but the most fun” [31]. Partnerships are also meaningful for patients, for example providing a sense of “meaningful belongingness” [14]. Thus, although some practices may perceive patient partnerships as prohibitively time and cost intensive, partnership benefits may offset their required time and resources by guiding practice decisions to be responsive to patient/family needs and priorities.

Coulter [48] noted that evidence to guide patient engagement is widely dispersed among multiple disciplines and journals. We synthesized and expanded previous publications on the scope, facilitators and challenges of patient partnerships in ambulatory care. The findings—including how the perspective and experiences of patient and families can catalyze improvement, and the need for guidance and training for practices and practice advisors alike—are consistent with previous analyses from inpatient and pediatric PCMH settings [11, 42–45]. However, the present analysis identifies partnership activities, barriers and challenges that are specific to the ambulatory care setting, for example related to practices’ workflow and incentive structures. Strengths of this study include incorporating expertise from organizations and individuals experienced in patient/family QI partnerships. This expertise is reflected in published and unpublished materials included in the narrative review, as well as focus group findings. Several identified resources are shown in Table 3.

Table 3 Sample resources for patient and family partnership in ambulatory care quality improvement
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Limitations of this study include a small focus group sample that may not be representative. Literature review results include learnings from other countries, which might not apply to the United States. Our conclusions about patient and family partnership outcomes are limited given that we identified only one randomized trial about policy and practice in Canada; however, findings from this trial and other higher quality studies were similar to findings from case studies. In addition, the concordance of findings between the focus group and the narrative review helps support the validity of the research from each method. Ambulatory practices are increasingly inviting patients and families to participate in QI efforts. These efforts are enabled by the rapidly evolving healthcare landscape that incentivizes patient and family engagement in care and improvement, and new techniques to build capacity for patient partnerships in QI, including experience-based design [36]. We encourage the continued sharing of outcomes and best practices for creating and sustaining these important partnerships.