Exploration of the Voice of the Patient in Learning Health Systems: A Socio-Technical Perspective.

Despite learning health systems' focus on including the patients in improving healthcare services, research shows they are still considered participants, not partners. This article aims to provide practical guidance for recognizing and including the Voice of the Patient (VoP) as data in a continuous LHS by describing how the VoP can present itself, how it can be incorporated into the LHS and the barriers and enablers for doing so. Five key domains were identified to consider when including the patient perspective. The use of technology could be a facilitator for patients to provide their perspectives. However, there is a risk of increased health inequity by reducing the VoP of patients with low health or digital literacy.

Information Models Properties in Learning Health Systems: A Literature Review.

Learning Health Systems (LHS) are challenged by fragmented health data. In Valkyrie, information models (IM) are explored as translators for the underlying, fragmented data structures and can potentially extend to support a future LHS. In this paper, a literature review was performed to search for property requirements for semantic interoperable IMs in the context of an LHS. The literature was examined and property requirements elicited in the context of an LHS.

A Review of Requirements for Information Models in Learning Health Systems.

Learning Health System (LHS) and integrated care are challenged due to a fragmented health data landscape. An information model is agnostic to the underlying data structures and can potentially contribute to mitigating some of the gaps. In a research project, Valkyrie, we are exploring how metadata can be organized and used to promote service coordination and interoperability across levels of care. An information model is viewed as central in this context and as a future integrated LHS support. We examined the literature regarding property requirements for data, information and knowledge models in the context of semantic interoperability and an LHS. The requirements were elicited and synthesized into five guiding principles as a vocabulary to inform the information model design of Valkyrie. Further research on requirements and guiding principles for information model design and evaluation are welcomed.