Article type
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Abstract
Background: The US Institute of Medicine identified four areas necessary to establish a Learning Health System (LHS): science/informatics, patient-clinician relationships, incentives, and culture. Consumer engagement in the development, implementation, evaluation and quality improvement of LHSs is considered essential for the establishment of a functioning and sustainable LHS. As research activity and translational research is integral to LHSs, tensions between the roles of health consumers as “patients” and as “research participants” are inevitable. This is further complicated by the conceptual separation between clinical care and research, ethical approval processes and privacy legislation.
Objectives: We aimed to explore to what extent consumer engagement is reported in peer-reviewed literature and what it means to patients to be cared for under an LHS framework.
Methods: A narrative/scoping review (January 2016 to May 2019), using terms (“learning health system” and “learning health care system”) in PubMed and Scopus; 197 papers had an explicit discussion of LHSs. Six of these focussed on at least one aspect of LHS consumer engagement.
Results: Thirty-five papers reported challenges and barriers around health consumer engagement limiting LHS progress. Several papers reported the difficulties of gaining multiple permissions to access patient data for clinical use or research. Fifty-nine papers referred to health consumer participation or accessing consumer data. Only six papers, including one literature review, focussed on the role of health consumers in an LHS. Three concentrated on accessing patient health records or specific data from patient reported outcome or experience measures. The other three papers discussed the expectation to participate in research while accessing clinical care in LHS facilities. Patients were likely to participate in research if they perceived benefits and had developed trusting relationships with their clinicians. One study found that patients feel obliged to take part in research studies as it is an expectation in an LHS. Two papers raised the issue of the appropriateness of seeking informed consent when undertaking research about clinical care delivery as this type of research crosses the boundaries between clinical care, research and quality improvement.
Conclusions: Data and knowledge about patients is a significant driver of LHSs; however, we found few studies about LHSs that explored the role of patients or health consumers. Many studies spoke in general terms about patient engagement and reported the lack of engagement as a barrier to LHS implementation. More research is needed to explore the best ways of engaging with consumers when developing and implementing LHSs.
Patient or healthcare consumer involvement: Consumers were not directly involved in this scoping review. The Partnership Centre for Health System Sustainability collaborates with the Consumers Health Forum of Australia.
Objectives: We aimed to explore to what extent consumer engagement is reported in peer-reviewed literature and what it means to patients to be cared for under an LHS framework.
Methods: A narrative/scoping review (January 2016 to May 2019), using terms (“learning health system” and “learning health care system”) in PubMed and Scopus; 197 papers had an explicit discussion of LHSs. Six of these focussed on at least one aspect of LHS consumer engagement.
Results: Thirty-five papers reported challenges and barriers around health consumer engagement limiting LHS progress. Several papers reported the difficulties of gaining multiple permissions to access patient data for clinical use or research. Fifty-nine papers referred to health consumer participation or accessing consumer data. Only six papers, including one literature review, focussed on the role of health consumers in an LHS. Three concentrated on accessing patient health records or specific data from patient reported outcome or experience measures. The other three papers discussed the expectation to participate in research while accessing clinical care in LHS facilities. Patients were likely to participate in research if they perceived benefits and had developed trusting relationships with their clinicians. One study found that patients feel obliged to take part in research studies as it is an expectation in an LHS. Two papers raised the issue of the appropriateness of seeking informed consent when undertaking research about clinical care delivery as this type of research crosses the boundaries between clinical care, research and quality improvement.
Conclusions: Data and knowledge about patients is a significant driver of LHSs; however, we found few studies about LHSs that explored the role of patients or health consumers. Many studies spoke in general terms about patient engagement and reported the lack of engagement as a barrier to LHS implementation. More research is needed to explore the best ways of engaging with consumers when developing and implementing LHSs.
Patient or healthcare consumer involvement: Consumers were not directly involved in this scoping review. The Partnership Centre for Health System Sustainability collaborates with the Consumers Health Forum of Australia.