Relatively few studies describe what primary care practice teams are currently doing at the basic level of soliciting and acting on patient input on the way that their care is delivered. A survey of 112 NCQA-certified patient-centered medical home (PCMH) practices found that 78% conducted patient surveys, 63% gathered qualitative input through focus groups or other feedback, 52% provided a suggestion box, and 32% included patients on advisory councils or teams [6]. Fewer than one-third of PCMH-certified practices were engaging patients or families in more intensive roles as ongoing advisors on practice design or practice improvement [6]. Randomized controlled trials have shown that patient involvement in developing informational materials results in more readable and relevant information [7]. Patient and family involvement in identifying organizational priorities within clinical practice settings resulted in greater alignment with the chronic care model and the PCMH when compared with control groups and resulted in greater agreement between patients and health care professionals [4]. Moreover, a number of innovative health care organizations credit their success in transformation to their patient partnerships [8–10].
Within this context, current practices at community health centers (CHCs) are of particular interest. CHCs are not-for-profit organizations that deliver primary and preventive care to more than 22 million people in the United States [11]. A large proportion of their patients are poor and live in medically underserved communities. More than one-third (37.5%) of CHC patients are uninsured and 38.5% are on Medicaid [12]. Perhaps because of their commitment to caring for medically vulnerable populations that have often had difficulty obtaining needed medical services, some CHCs have been on the forefront of patient engagement [8]. In addition, many CHCs are federally qualified health care centers, which are mandated to engage members of their communities within their governing boards [13]. However, relatively little is known about how CHCs are engaging patients as practice improvement partners or the perceived impact of this engagement on CHC strategic goals, policies, and programs. This study explores these factors and examines the organizational characteristics and processes associated with patients having an impact on practice improvement activities.
Methods
We conducted a cross-sectional, web-based survey of primary care clinician and staff leaders at CHCs in July–August 2014 to assess current strategies, attitudes, facilitators, and barriers toward engaging patients in practice improvement efforts. The study protocol was developed jointly by the San Francisco Bay Area Collaborative Research Network (SFBayCRN), the University of California San Francisco Center for Excellence in Primary Care (CEPC), and the Western Clinicians Network (WCN). The protocol was reviewed by the University of California San Francisco Committee on Human Research and determined to be exempt research (study number 14-13662).
Survey Participants
Participants in the web-based survey were members of the WCN, a peer-led, volunteer, membership-based association of medical leaders of community health centers in California, Arizona, Nevada, and Hawaii. An invitation and link to a web-based survey was sent by email to members working at WCN CHC, who received up to 3 reminders to complete the survey. We allowed one response per CHC surveyed; in cases where more than one CHC leader was a member of WCN, we requested that the person most familiar with patient engagement activities respond to the survey. In the event of multiple respondents from an organization, incomplete responses were dropped and one complete response was randomly selected to represent the organization. Participants in the survey were entered into a drawing for ten $50 gift cards and one iPad.