A Patient-Centered Framework for System-Level Sharing of Health Records

Abstract

The idea for this thesis developed over a number of years through our professional experiences with management of community-based healthcare delivery in the province of Ontario. We noticed inefficiencies and inconsistencies when it comes to sharing of health records between different health care organizations, as well as challenges in communicating that information in a holistic manner. Most healthcare organizations, today, are working towards online sharing of records within their organization, but community-care organizations are lagging behind hospitals. Even then, current sharing of records is focused on sharing between healthcare professionals on the same team and focused on one particular health outcome for a particular patient. However, at a system-level, a patient may interact with different healthcare professionals from different health organizations on different health outcomes for a patient. For example, a dentist, an orthopedic surgeon, and a home care support worker may all share the same patient, but they have different goals, and are trying to achieve different health outcomes. It remains challenging for patients to understand their health records and the relationship to their quality of life goals for a single organization, never mind trying to have a holistic overview of all their interactions with health care professionals. We were motivated to develop a systematic framework that could guide the development of system-level interoperable patient-centric sharing of health records. We also recognized and were motivated by patients’ enthusiasm for being more involved in, and informed of their health care delivery, and how they can benefit the healthcare system through their involvement. Existing systems developed in Ontario, Sweden, Norway as well as three commercial systems from private industry were identified as related works that were part of our motivation as well. Our main contribution is a systematic framework consisting of governance principles, an ontology, and a conceptual architecture to guide development of systems for patient-centric sharing of health records. The governance principles define what is meant by system-level sharing of patient records and how it should be managed. The ontology defines the critical minimum dataset of the entities and attributes that healthcare organizations across a healthcare system should know and share. It also includes the data inputs that a patient can provide. The conceptual architecture identifies artifacts such as a patient portal, and a platform independent API that securely enables system-level sharing of health records about a patient. Our proposed framework is validated through a set of case studies and a patient portal prototype (with API) that was reviewed by a panel of healthcare experts.