Patient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making. However, in order to consistently implement and study PFCC, health care systems and researchers need a solid evidentiary base. Most current definitions and models of PFCC are broad and conceptual, and difficult to translate into measurable behaviors and actions. This paper provides a brief overview of all actions that focus group respondents associated with PFCC in ambulatory (outpatient) care settings and then explores actions associated with the concept of “dignity and respect” in greater detail. We conducted nine focus groups with patients, family members, and physicians in three metropolitan regions across the United States. Group discussions were transcribed and analyzed using a thematic analysis approach. We identified 14 domains and 47 specific actions that patients, family members, and physicians associate with PFCC. In addition to providing a detailed matrix of these domains and actions, this paper details the actions associated with the “dignity and respect” concept. Key domains identified under “dignity and respect” include: 1) building relationships, 2) providing individualized care, and 3) respecting patients’ time. Within these domains we identified specific actions that break down these abstract ideas into explicit and measurable units such as taking time, listening, including family, and minimizing wait times. We identified 9, 6, and 3 specific actions associated, respectively, with building relationships, providing individualized care, and respecting patients’ time. Our work fills a critical gap in our ability to understand and measure PFCC in ambulatory care settings by breaking down abstract concepts about PFCC into specific measurable actions. Our findings can be used to support research on how PFCC affects clinical outcomes and develop innovative tools and policies to support PFCC.

Health benefits to relatives of people at known genetic risk for hereditary cancer syndromes is key to realizing the promise of precision medicine. We conducted a qualitative study to design a patient- and family-centered program for direct contact of relatives to recommend cascade genetic testing. We conducted two rounds of data collection using focus groups followed by individual interviews with patients with HBOC or Lynch syndrome and a separate sample of people with a family history of hereditary cancers. Results indicate that U.S.-based health system-led direct contact of relatives is acceptable to patients and families, should take a programmatic approach, include consent of relatives before proband testing, complement to existing patient-mediated disclosure, and allow for relative control of information. Our findings suggest a set of requirements for U.S.-based direct contact programs that could ultimately benefit more relatives than current approaches.

Health systems increasingly recognize the impact of social determinants of health such as access to housing, transportation, and nutritious food. Lay health workers have been used to address patients' social determinants of health through resource referral and goal setting in targeted populations, such as individuals with diabetes. However, we know of no studies that evaluate this type of role for a general primary care population. To assess the implementation and impact of the Community Resource Specialist (CRS) role in Kaiser Permanente Washington. We analyzed data from staff interviews, patient focus groups, clinic site visits, patient surveys, the electronic health record, and administrative sources. Satisfaction with CRSs was high, with 92% of survey respondents choosing "very satisfied" or "somewhat satisfied." Of patients with a resource referral and follow-up encounter, 45% reported using the resource (n = 229) and 86% who set a goal and had a follow-up encounter (n = 218) progressed toward their goal. Primary care teams reported workload easing. Patients who used CRSs and participated in focus groups reported behavior changes and improved health, although no changes were detected from electronic health records or patient survey data. Key learnings include the need to clearly define the CRS role, ensure high visibility to clinical staff, and facilitate personal introductions of patients (warm handoffs). Adding an individual to the primary care team with expertise in community resources can increase patient satisfaction, support clinicians, and improve patients' perceptions of their health and well-being.

Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research.

The patient-centered medical home model stresses the importance of team-based care as a foundation to improving care, costs, and patient experience. Medical assistants (MAs) are being used as key care team members even as traditional educational programs may not equip them for this new way of working. This paper describes an on-the-job, predominantly virtual training program aimed at building care teams by redefining the role of the MA and fostering team-based functioning. Participating MAs, clinic managers, and clinicians in 11 primary care clinics completed 18-item pre- and post-training surveys to assess confidence in MA skills and performance. In-depth 1-hour qualitative interviews were conducted with selected participating MAs, managers, and clinicians to assess MA self-efficacy and to understand their use of new skills. MAs, clinicians, and managers agreed that MAs improved skills in planned care and population management, self-management support and health coaching, and interdisciplinary communication and collaboration. MAs reported a positive training experience, that they shared their knowledge with other MAs in their clinic, and that their job satisfaction increased. A predominantly virtual 12-week program built the skills and confidence of MAs in proactive population management, health coaching, and collaboration and communication. This program shows the promise of a virtual approach to training that identifies, trains, and recognizes high-potential MAs.

Purpose: The Bariatric Experience Long Term (BELONG) prospective study cohort was created to address limitations in the literature regarding the relationship between surgical weight loss and psychosocial, health, behaviour and environmental factors. The BELONG cohort is unique because it contains 70% gastric sleeve and 64% patients with non-white race/ethnicity and was developed with strong stakeholder engagement including patients and providers.Participants: The BELONG cohort study included 1975 patients preparing to have bariatric surgery who completed a baseline survey in a large integrated health system in Southern California. Patients were primarily women (84%), either black or Hispanic (59%), with a body mass index (BMI) of 45.1±7.4 kg/m², age 43.3±11.5 years old, and 32% had at least one comorbidity.Findings to date: A total of 5552 patients were approached before surgery between February 2016 and May 2017, and 1975 (42%) completed a baseline survey. A total of 1203 (73%) patients completed the year 1 and 1033 (74%) patients completed the year 3 postoperative survey. Of these survey respondents, 1341 at baseline, 999 at year 1, and 951 at year 3 were included in the analyses of all survey and weight outcome data. A total of 803 (60% of eligible patients) had survey data for all time points. Data collected were self-reported constructs to support the proposed theoretical model. Height, weight and BMI were abstracted from the electronic medical record to obtain the main outcomes of the study: weight loss and regain.Future plans: We will collect self-reported constructs and obtain height, weight and BMI from the electronic medical record 5 years after bariatric surgery between April 2022 and January 2023. We will also collect patient experiences using focus groups of 8–12 patients each throughout 2022.