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New models of primary care include patient-reported outcome measures (PROMs) to promote patient-centered care. PROMs provide information on patient functional status and well-being, can be used to enhance care quality, and are proposed for use in assessing performance. Our objective was to identify a short list of candidate PROMs for use in primary care practice and to serve as a basis for performance measures (PMs). We used qualitative and quantitative methods to identify relevant patient-reported outcome (PRO) domains for use in performance measurement (PRO-PM) and their associated PROMs. We collected data from key informant groups: patients (n = 13; one-on-one and group interviews; concept saturation analysis), clinical thought leaders (n = 9; group discussions; thematic analysis), primary care practices representatives (n = 37; six focus groups; thematic analysis), and primary care payer representatives (n = 10; 12-question survey; frequencies of responses). We merged the key informant group information with findings from environmental literature scans. We conducted a targeted evidence review of measurement properties for candidate PROMs. We used a scoping review and key informant groups to identify PROM evaluation criteria, which were linked to the National Quality Forum measure evaluation criteria. We developed a de novo schema to score candidate PROMs against our criteria. We identified four PRO domains and 10 candidate PROMs: 3 for depressive symptoms, 2 for physical function, 3 for self-efficacy, 2 for ability to participate. Five PROMs met ≥ 70% of the evidence criteria for three PRO domains: PHQ-9 or PROMIS Depression (depression), PF-10 or PROMIS-PF (physical functioning), and PROMIS Self-Efficacy for Managing Treatments and Medications (self-efficacy). The PROMIS Ability to Participate in Social Roles and Activities met 68% of our criteria and might be considered for inclusion. Existing evidence and key informant data identified 5 candidate PROMs to use in primary care. These instruments can be used to develop PRO-PMs.

Patient, public, consumer, and community (P2C2) engagement in organization-, community-, and systemlevel healthcare decision-making is increasing globally, but its formal evaluation remains challenging. To define a taxonomy of possible P2C2 engagement metrics and compare existing evaluation tools against this taxonomy, we conducted a systematic review. A broad search strategy was developed for English language publications available from January 1962 through April 2015 in PubMed, Embase, Sociological Abstracts, PsycINFO, EconLit, and the gray literature. A publication was excluded if: (1) the setting was not healthcare delivery (ie, we excluded non-health sectors, such as urban planning; research settings; and public health settings not involving clinical care delivery); (2) the P2C2 engagement was episodic; or (3) the concept of evaluation or possible evaluation metrics were absent. To be included as an evaluation tool, publications had to contain an evaluative instrument that could be employed with minimal modification by a healthcare organization. A total of 199 out of 3953 publications met exclusion and inclusion criteria. These were qualitatively analyzed using inductive content analysis to create a comprehensive taxonomy of 116 possible metrics for evaluating P2C2 engagement. 44 outcome metrics were grouped into three domains (internal, external, and aggregate outcomes) that included six subdomains: impact on engagement participants, impact on services provided by the healthcare organization, impact on the organization itself, influence on the broader public, influence on population health, and engagement cost-effectiveness. The 72 process metrics formed four domains (direct process metrics; surrogate process metrics; aggregate process metrics; and preconditions for engagement) that comprised sixteen subdomains. We identified 23 potential tools for evaluating P2C2 engagement. The identified tools were published between 1973-2015 and varied in their coverage of the taxonomy, methodology used (qualitative, quantitative, or mixed), and intended evaluators (organizational leaders, P2C2 participants, external evaluators, or some combination). Parts of the metric taxonomy were absent from all tools. By comprehensively mapping potential outcome and process metrics as well as existing P2C2 engagement tools, this review supports high-quality P2C2 engagement globally by informing the selection of existing evaluation tools and identifying gaps where new tools are needed.

The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-\"care partners\"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited. We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs. Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan \"People remember less than half of what their doctors say,\" which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits. Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.

Background Despite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems). Objective To obtain rich insights about what patients who are not PFAC members expect of PFACs. Design From July to September 2018, we conducted a qualitative study using focus groups. Setting and participants We recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council. Approach Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. Results Forty‐two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio‐economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives’ diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems. Conclusions Eliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs’ activities. Attention should be given to improving and measuring patients’ awareness of, and interactions with, their patient representatives.

The Resilience In Stressful Events (RISE) program that supports healthcare professionals traumatized by stressful clinical events has had a stable, volunteer-based membership since its inception in 2011 at Johns Hopkins Hospital. For this study, we explored RISE members' perceptions of the program that contribute to their retention and the program's sustainability. We distributed a survey with quantitative and qualitative elements to assess perceptions in seven domains of interest. The response rate was 100%. Pearson chi-squared tests established statistical associations among quantitative variables. Qualitative data were explored using content analysis. Of 27 respondents, 19 had been members for 3 or more years. The training completion percentage was 100%, and the annual turnover percentage was 12%. Members found their duties to be meaningful (100%), personally satisfying (96%), and positively impactful (93%). A total of 89% reported confidence in their competency to perform RISE duties, 84% in their autonomy, and 56% in their personal resilience; 28% reported some burnout from RISE duties. Cronbach's α for these domain scores ranged from 0.65 to 0.97. Content analysis also revealed positive perceptions of RISE volunteering and personal empowerment. Members indicated a personal affinity with RISE and gains in energy and enjoyment from their membership. Contributing factors to volunteer retention may include members' perceptions that RISE builds valued skills and supports their affinity for others.

Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.

Background: Diagnostic excellence refers to the optimal process to attain an accurate and precise explanation about a patient’s condition and incorporates the perspectives of patients and their care partners. Patient-reported measures (PRMs), designed to capture patient-reported information, have potential to contribute to achieving diagnostic excellence. We aimed to craft a set of roadmaps illustrating goals and guiding the development of PRMs for diagnostic excellence (\"Roadmaps\"). Methods: We used iterative inputs from environmental literature scans, expert consultations, and patient voice and employed human-centred design (HCD) and equity-focused road-mapping. The culminating activity of these approaches was an Expert Convening. Results: Use of PRMs can achieve multiple goals for diagnostic excellence, including but not limited to: (1) PRMs for diagnostic continuity, (2) diagnostic PRM alerts, (3) PRM-based quality improvement, (4) PRMs for research, (5) PRMs for routine screening, (6) PRM-based diagnostic excellence population-level patterns, and (7) PRMs supporting patient storytelling. Equity is considered as a cross-cutting goal. Altogether these and future goals support operationalising a vision of patient-reported diagnostic excellence. Roadmaps were developed as a dynamic tool to illustrate PRMs in relation to specific steps with feedback loops to accomplish goals, anticipated timeframes (8-15 years), synergies to foster, and challenges to overcome. Roadmaps are practical in their following PRMs through the stages of development, endorsement, implementation and scaling, and acting upon those measures. Timeframe estimates assume immediate transitions between these stages and no acceleration through incentives and active coordination. Conclusion: PRMs for diagnostic excellence have potential to connect patient perspectives, equity, and achievable goals. Roadmaps offer a design approach to enable coordinating measurement activities among diverse stakeholders. Roadmaps also highlight versatility in ways patient-reported information can be collected and used, from clinical settings to public health contexts. Patient-reported diagnostic excellence cannot be established as a solely top-down endeavour, but inherently benefits from bottom-up approaches.

Background Many patient portals allow patients to authorize a care partner to use the portal on their behalf, with evidence suggesting a range of benefits to patients, care partners, and clinicians. Shared or proxy access aligns with patient- and family-centered care and supports care partners’ legitimacy and identification by clinicians in patient portal interactions. As shared access uptake remains low, the Coalition for Care Partners ( https://coalitionforcarepartners.org ) and three healthcare delivery organizations co-designed an initiative promoting shared access to the patient portals of older adults. Objective To evaluate an initiative’s demonstration through users’ perspectives. Design The 12-month demonstration was launched at five clinics (geriatric oncology, primary care, and geriatric medicine) across the three organizations. Clinicians and staff were interviewed mid- and post-demonstration via focus groups and individually; clinic patients and care partners responded to an anonymous post-demonstration online portal survey. Participants Demonstration users included established patients from the five clinics and their care partners, as well as clinic physicians, nurses, social workers, care managers, patient-facing staff, administrators, and information technology specialists. Approach We followed the Consolidated Framework for Implementation Research to develop interview guides and inform our analysis of the survey’s open-ended responses and interview transcripts. We analyzed 11 focus groups, 10 individual interviews, and 392 patients’ and 79 care partners’ survey responses employing rapid assessment procedures methodology. Key results The demonstration was appropriate, useful, routinized in the clinics, and well received by patients and care partners. The demonstration was perceived as undemanding and low-cost, utilizing existing infrastructure and organizational processes. Facilitators included alignments of shared access with clinics’ practice and philosophy, organizations’ policies, and needs of patients and care partners. Identified barriers included clinicians’ competing priorities and patients’ and care partners’ low awareness and motivation for using shared access. Conclusions The Coalition for Care Partners can spread this appropriate, useful, undemanding, and low-cost initiative. Further efforts might be supported by policies that ensure that shared access benefits are bolstered, potential harms of unidentifiable access are emphasized, and registration is conceptualized as an opt-out versus opt-in process.

Patient, public, consumer, and community (P2C2) engagement in healthcare delivery, research, and policy-making has been long considered an ethical obligation and is increasingly a regulatory requirement globally. The requirement to include a P2C2 member on various governing bodies may have inadvertently created what Evelyne de Leeuw calls the \"consucrat\" – a career consumer who has been designated and professionalized to function on behalf of a particular group or community. The concept of a consucrat can be problematic when a P2C2 member is co-opted by an institution governing body or in situations where institutions only seek and listen to the same voice over time. In this commentary, we suggest that one way to avoid these problems is to take seriously the concept and process of representation. Representation is only meaningful when P2C2 members are actively connected with those whom they represent. Doing so helps ensure P2C2 members remain grounded in the real-world concerns of their constituency and that representatives, backed by the voices of others, will be more powerful in effecting change.