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A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

ABSTRACT: BACKGROUND:Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. OBJECTIVE:Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. METHODS:A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. MEASUREMENTS:Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. RESULTS:We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. DISCUSSION:The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.

SUBMITTER: Kamal AH

PROVIDER: S-EPMC5756463 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

Kamal Arif H AH Kirkland Kathryn B KB Meier Diane E DE Morgan Tamara S TS Nelson Eugene C EC Pantilat Steven Z SZ

Journal of palliative medicine 20171101 S2

<h4>Background</h4>Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable.<h4>Objective</h4>Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness.<h4>Methods</h4>A learning he ...[more]

PMID: 29091509

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Project description:BackgroundPerson-centered care (PCC) is an important concept in many countries' national guidelines and dementia plans. Key intervention categories, i.e., a taxonomy of person-centered (PC)-interventions, to provide person-centered dementia care, are difficult to identify from literature.ObjectiveThis systematic review aimed to identify and categorize published PC-interventions into key intervention categories to guide the provision of person-centered dementia care.MethodsConduct of this systematic review followed Cochrane guidelines. A search of the dimensions 'Dementia', 'Person-Centered Care', and 'Intervention' combined was performed in PubMed, EMBASE, and Web of Science. Study selection was based on 2-stage screening against eligibility criteria, limited to controlled study designs. Information about interventions and outcomes was extracted into an "Effects Table". The identified PC-interventions were categorized in intervention categories to provide person-centered dementia care.ResultsSearches identified 1,806 records. 19 studies were included. These covered a range of psychosocial interventions, oftentimes multi-component interventions, which followed heterogeneous approaches. Studies were conducted in long-term care/hospital settings. Nine key intervention categories were identified: social contact, physical activities, cognitive training, sensory enhancement, daily living assistance, life history oriented emotional support, training and support for professional caregivers, environmental adjustments, and care organization.ConclusionOur findings provide a current overview of published PC-interventions in dementia, which followed heterogeneous approaches under the PCC-concept. The heterogeneity made it challenging to identify a well-defined concept of PCC and common key intervention categories. An effectiveness-evaluation of "PC" - including "relationship-centered"-interventions may be valuable, to assess whether an explicit focus on relationships around PCC-interventions yields an added benefit.Prospero-idCRD42021225084.

Project description:Person-centered maternity care (PCMC) is defined as care which is respectful of and responsive to women's and families' preferences, needs, and values. In this cross-sectional study we aimed to evaluate the correlations among the degree of PCMC implementation, key indicators of provision of care, and women's satisfaction with maternity care in Sri Lanka. Degree of PCMC implementation was assessed using a validated questionnaire. Provision of good key practices was measured with the World Health Organization (WHO) Bologna Score, whose items include: 1) companionship in childbirth; 2) use of partogram; 3) absence of labor stimulation; 4) childbirth in non-supine position; 5) skin-to-skin contact. Women's overall satisfaction was assessed on a 1-10 Likert scale. Among 400 women giving birth vaginally, 207 (51.8%) had at least one clinical risk factor and 52 (13.0%) at least one complication. The PCMC implementation mean score was 42.3 (95%CI 41.3-43.4), out of a maximum score of 90. Overall, while 367 (91.8%) women were monitored with a partogram, and 293 (73.3%) delivered non-supine, only 19 (4.8%) did not receive labour stimulation, only 38 (9.5%) had a companion at childbirth, and 165 (41.3%) had skin-to-skin contact immediately after birth. The median total satisfaction score was 7 (IQR 5-9). PCMC implementation had a moderate correlation with women's satisfaction (r = 0.58), while Bologna score had a very low correlation both with satisfaction (r = 0.12), and PCMC (r = 0.20). Factors significantly associated with higher PCMC score were number of pregnancies (p = 0.015), ethnicity (p<0.001), presence of a companion at childbirth (p = 0.037); absence of labor stimulation (p = 0.019); delivery in non-supine position (p = 0.016); and skin-to-skin contact (p = 0.005). Study findings indicate evidence of poor-quality care across several domains of mistreatment in childbirth in Sri Lanka. In addition, patient satisfaction as an indicator of quality care is inadequate to inform health systems reform.

Dataset Information

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

Publications

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

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