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Table 2 Characterization of the four stages of the Person-Centered Integrated Care (PC-IC) cyclical process for evaluation of individual Patient Pathways (iPP)

From: A person-centered integrated care quality framework, based on a qualitative study of patients’ evaluation of care in light of chronic care ideals

Description of ideal care Key questions Supporting literature
1. Goals
The unit of observation is the long-term iPP. The ideal iPP should meet the overarching personalized goals, which reflect “What matters to the person.” The overarching goal defines the scope of the care plan. It includes; • an empathic and sensitive effort to understand what the person’s needs, values and preferences are • Negotiating and documenting goals of care that are relevant, realistic and observable. • eliciting and recording the person’s resources as a partner in decision making regarding health and wellbeing Overarching personal goals can be broken down into supporting sub-goals in a goal hierarchy. In case of conflict between professional recommendations and personal goals, the person’s goals should prevail, unless they compromise legal or ethical principles. In case of legal or ethical barriers, a documentation of how the conflict was explored with the person and what conclusions were reached is desirable. How do persons express “What matters to them?” What are the patients’ perceptions of healthcare’s reaction to his/her articulation of “What matters to them?” Did the informants express unmet needs, values or preferences? If there were unmet needs, conflicting view of goals, were these described or explained in the EHR? What needs for self-management support do informants voice, and were these needs met? • Goal-oriented care [31, 35, 83] • The informed, active patient [84] • Patient-centered care [33] • Person-Centered care [85] • People centered care [86] • What matters to you? [63, 64] • Self-management support, patient involvement, and engagement [87] • Self-determination theory [88] • The ethics of authenticity [89]
2. The care plan
The care plan is based on a multidisciplinary review of the goals from step 1. The first step is to identify skills and competencies needed to achieve these goals. There are no organizational limits regarding whom to include in the iPP plan. The decision process should involve all relevant providers and the patient/caregivers as far as possible to promote engagement, realism, and ownership of the plan. Plans take into account and document the patient’s resources as a partner in the collaborative work for health and wellbeing The care plan should ideally: • Be committed to and aligned with personal goals • Be evidence-based • Include a multidisciplinary review in cases of multimorbidity • Ignore organizational boundaries • Describe self-management and its support • Describe monitoring for exacerbations • Include a crisis management plan • Include a time and method for goal evaluation. • Include community resources that can be leveraged to help meet goals Was a written or verbal care plan described in the EHR, or by the patient? What are the patient’s descriptions of involvement and engagement in care planning and shared decision-making (SDM)? What are the EHR descriptions of SDM? Do care plans include the following components: • Reference to personalized goals? • Self-management support? • Multidisciplinary review whenever relevant? • Monitoring for exacerbations? • Emergency or crisis management? • Checkpoints for evaluation of goal attainment, or goal revision? • Shared decision making [90, 91] • Prepared proactive healthcare team [84] • A personalized care plan [50, 92] • Decision support [84] • Evidence-based medicine [91] • Self-management support, patient involvement, and engagement [87]
3. Care delivery
Care delivery builds on the care plan from step 2. The delivery of care is a system property, not a feature of individual professionals. The care system should identify the resources necessary to reach overarching goals irrespective of organizational boundaries and responsibilities. A marker of high quality care delivery is that the person feels that he/she is seen, heard and recognized as a person. Seamless care delivery depends on the recruitment of the resources that will implement the care plan with attention to Continuity of Care, and it’s organizational, informational and relational dimensions as described by Haggerty [93]. Haggerty’s “relational continuity,” serves primarily to elicit and communicate “what matters” to the system. Thus, we argue that “relational continuity” is a kind of informational continuity. • Was the care plan operationalized to show where, when and who would provide their care? • If so: What was the perceived usefulness of such operationalized plans? • Did patients experience unexpected care events? • Did patients have to intervene to correct mistakes because expected care delivery was not provided? • Were patients directed to community resources outside of the healthcare system such as peer support organizations or social services? • What were patient’s statements regarding the organizational, informational and relational continuity of care across their iPP? • Delivery system design [84] • Community resources [84] • Care pathways [94] • Continuity of care [93]
4. Goal attainment
The iPP success is measured by the degree of goal attainment of goals set in step 1. Goal evaluation enables learning and adjustment of the iPP for the next turn of the care cycle. • Did they plan and assess goal attainment? • If so: Did they adjust the future care plan according to lessons learned? • Health and Functional outcomes [84] • Goal oriented care [31, 35, 83, 75]
  1. Descriptions of ideal care, key questions, and literature underpinnings to support a consistent evaluation of care across observers and informants