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Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems.

ABSTRACT: Patient and family engagement has been identified as key to fulfilling Learning Healthcare Systems' (LHSs') promise as a model for improving clinical care, catalyzing research, and controlling costs. Little is known, however, about the state of patient engagement in the learning mission of these systems or about what governance structures and processes facilitate such engagement. Here, we report on an interview study of 99 patient and employee leaders in 16 systems. We found both variable levels of engagement and broad agreement that shared governance of learning remains a work in progress. We also identified a range of practices that can support or thwart development of an organizational culture conducive to shared governance, including transparency, capacity building, infrastructure investment, leadership, attention to diversity of patient partners, and committee structures. In LHSs with most sophisticated shared governance, both employees and patients contribute to building a democratic learning culture.

SUBMITTER: Grob R

PROVIDER: S-EPMC8753297 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature

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Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems.

Grob Rachel R Gleason Katharine K McLean Paul P McGraw Sarah S Solomon Mildred M Joffe Steven S

Learning health systems 20210525 1

Patient and family engagement has been identified as key to fulfilling Learning Healthcare Systems' (LHSs') promise as a model for improving clinical care, catalyzing research, and controlling costs. Little is known, however, about the state of patient engagement in the learning mission of these systems or about what governance structures and processes facilitate such engagement. Here, we report on an interview study of 99 patient and employee leaders in 16 systems. We found both variable levels ...[more]

PMID: 35036551

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Project description:BackgroundThis study examines research knowledge infrastructures (RKIs) found in health systems. An RKI is defined as any instrument (i.e., programs, interventions, tools) implemented in order to facilitate access, dissemination, exchange, and/or use of evidence in healthcare organisations. Based on an environmental scan (17 key informant interviews) and scoping review (26 studies), we found support for a framework that we developed that outlines components that a health system can have in its RKI. The broad domains are climate for research use, research production, activities used to link research to action, and evaluation.The objective of the current study is to profile the RKI of three types of health system organisations--regional health authorities, primary care practices, and hospitals--in two Canadian provinces to determine the current mix of components these organisations have in their RKI, their experience with these components, and their views about future RKI initiatives.MethodsThis study will include semistructured telephone interviews with a purposive sample region of a senior management team member, library/resource centre manager, and a 'knowledge broker' in three regional health authorities, five or six purposively sampled hospitals, and five or six primary care practices in Ontario and Quebec, for a maximum of 71 interviewees. The interviews will explore (a) which RKI components have proven helpful, (b) barriers and facilitators in implementing RKI components, and (c) views about next steps in further development of RKIs.DiscussionThis is the first qualitative examination of potential RKI efforts that can increase the use of research evidence in health system decision making. We anticipate being able to identify broadly applicable insights about important next steps in building effective RKIs. Some of the identified RKI components may increase the use of research evidence by decision makers, which may then lead to more informed decisions.

Project description:Patient harm is a leading cause of global disease burden with considerable morbidity, mortality, and economic impacts for individuals, families, and wider society. Large bodies of evidence exist for strategies to improve safety and reduce harm. However, it is not clear which patient safety issues are being addressed globally, and which factors are the most (or least) important contributors to patient safety improvements. We aimed to explore the perspectives of international patient safety experts to identify: (1) the nature and range of patient safety issues being addressed, and (2) aspects of patient safety governance and systems that are perceived to provide value (or not) in improving patient outcomes. English-speaking Fellows and Experts of the International Society for Quality in Healthcare participated in a web-based survey and in-depth semistructured interview, discussing their experience in implementing interventions to improve patient safety. Data collection focused on understanding the elements of patient safety governance that influence outcomes. Demographic survey data were analysed descriptively. Qualitative data were coded, analysed thematically (inductive approach), and mapped deductively to the System-Theoretic Accident Model and Processes framework. Findings are presented as themes and a patient safety governance model. The study was approved by the University of South Australia Human Research Ethics Committee. Twenty-seven experts (59% female) participated. Most hailed from Africa (n = 6, 22%), Australasia, and the Middle East (n = 5, 19% each). The majority were employed in hospital settings (n = 23, 85%), and reported blended experience across healthcare improvement (89%), accreditation (76%), organizational operations (64%), and policy (60%). The number and range of patient safety issues within our sample varied widely with 14 topics being addressed. Thematically, 532 textual segments were grouped into 90 codes (n = 44 barriers, n = 46 facilitators) and used to identify and arrange key patient safety governance actors and factors as a 'system' within the System-Theoretic Accident Model and Processes framework. Four themes for improved patient safety governance were identified: (1) 'safety culture' in healthcare organizations, (2) 'policies and procedures' to investigate, implement, and demonstrate impact from patient safety initiatives, (3) 'supporting staff' to upskill and share learnings, and (4) 'patient engagement, experiences, and expectations'. For sustainable patient safety governance, experts highlighted the importance of safety culture in healthcare organizations, national patient safety policies and regulatory standards, continuing education for staff, and meaningful patient engagement approaches. Our proposed 'patient safety governance model' provides policymakers and researchers with a framework to develop data-driven patient safety policy.

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Project description:BackgroundAll countries face challenging decisions about healthcare coverage. Malawi has committed to achieving Universal Health Coverage (UHC) by 2030, the timeframe set out by the Sustainable Development Goals (SDGs). As in other low income countries, scarce resources stand in the way of more equitable health access and quality in Malawi. Its health sector is highly dependent on donor contributions, and recent poor governance of government-funded healthcare saw donors withdraw funding, limiting services and resources. The 2017 National Health Plan II and accompanying Health Strategic Plan II identify the importance of improved governance and strategies to achieve more effective cooperation with stakeholders. This study explores health sector stakeholders' perceptions of the challenges to improving governance in Malawi's national health system within the post-2017 context of government attempts to articulate a way forward.MethodsA qualitative study design was used. Interviews were conducted with 22 representatives of major international and faith-based non-government organisations, civil society organisations, local government and government-funded organisations, and governance bodies operating in Malawi. Open questions were asked about experiences and perceptions of the functioning of the health system and healthcare decision-making. Content relating to healthcare governance was identified in the transcripts and field notes and analysed using inductive content analysis.ResultsStakeholders view governance challenges as a significant barrier to achieving a more effective and equitable health system. Three categories were identified: accountability (enforceability; answerability; stakeholder-led initiatives); health resource management (healthcare financing; drug supply); influence in decision-making (unequal power; stakeholder engagement).ConclusionsHealth sector stakeholders see serious political, structural, and financial challenges to improving governance in the national health system in Malawi which will impact the government's goal of achieving UHC by 2030. Stakeholders identify the need for improved oversight, implementation, service delivery and social accountability of government-funded service providers to communities. Eighteen months after the introduction of the policy documents, they see little evidence of improved governance and have little or no confidence in the government's ability to deliver UHC. The difficulties stakeholders perceive in relation to building equitable and effective healthcare governance in Malawi have relevance for other resource-limited countries which have also committed to the goal of UHC.

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Dataset Information

Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems.

Publications

Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems.

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