Abstract

BackgroundTraditionally, digital health data management has been based on electronic health record (EHR) systems and has been handled primarily by centralized health providers. New mechanisms are needed to give patients more control over their digital health data. Personal health libraries (PHLs) provide a single point of secure access to patients' digital health data and enable the integration of knowledge stored in their digital health profiles with other sources of global knowledge. PHLs can help empower caregivers and health care providers to make informed decisions about patients’ health by understanding medical events in the context of their lives.ObjectiveThis paper reports the implementation of a mobile health digital intervention that incorporates both digital health data stored in patients’ PHLs and other sources of contextual knowledge to deliver tailored recommendations for improving self-care behaviors in diabetic adults.MethodsWe conducted a thematic assessment of patient functional and nonfunctional requirements that are missing from current EHRs based on evidence from the literature. We used the results to identify the technologies needed to address those requirements. We describe the technological infrastructures used to construct, manage, and integrate the types of knowledge stored in the PHL. We leverage the Social Linked Data (Solid) platform to design a fully decentralized and privacy-aware platform that supports interoperability and care integration. We provided an initial prototype design of a PHL and drafted a use case scenario that involves four actors to demonstrate how the proposed prototype can be used to address user requirements, including the construction and management of the PHL and its utilization for developing a mobile app that queries the knowledge stored and integrated into the PHL in a private and fully decentralized manner to provide better recommendations.ResultsTo showcase the main features of the mobile health app and the PHL, we mapped those features onto a framework comprising the user requirements identified in a use case scenario that features a preventive intervention from the diabetes self-management domain. Ongoing development of the app requires a formative evaluation study and a clinical trial to assess the impact of the digital intervention on patient-users. We provide synopses of both study protocols.ConclusionsThe proposed PHL helps patients and their caregivers take a central role in making decisions regarding their health and equips their health care providers with informatics tools that support the collection and interpretation of the collected knowledge. By exposing the PHL functionality as an open service, we foster the development of third-party applications or services and provide motivational technological support in several projects crossing different domains of interest.

Highlights

  • OverviewHistorically, medicine has been largely health care provider–centered rather than patient-centered [1,2,3]

  • To showcase the main features of the mobile health app and the Personal health libraries (PHLs), we mapped those features onto a framework comprising the user requirements identified in a use case scenario that features a preventive intervention from the diabetes self-management domain

  • The patient requirements for a PHL that we identified in the literature [7,8,9,10,11,12] fall into three broad themes: (1) construction and management of the library, (2) dynamic discovery and integration of new knowledge related to data and types stored in the library, and (3) the ability to leverage the knowledge stored in the library through digital interventions (Table 2)

Read more

Summary

Introduction

OverviewHistorically, medicine has been largely health care provider–centered rather than patient-centered [1,2,3]. The new trend is moving toward incorporating patients' social and behavioral characteristics into electronic health records (EHRs) [4] This combination of medical, social, behavioral, and lifestyle information about the patient is essential to facilitate understanding of medical events in the context of one’s life and, to allow lifestyle choices to be considered jointly with that patient’s medical context [5]. This data is generated over time by patients, their caregivers, and their providers and is potentially useful to all parties for decision making [6]. PHLs can help empower caregivers and health care providers to make informed decisions about patients’ health by understanding medical events in the context of their lives

Methods
Results
Discussion
Conclusion
Full Text
Published version (Free)

Talk to us

Join us for a 30 min session where you can share your feedback and ask us any queries you have

Schedule a call