JMIR Publications

ABSTRACT

Background:

Digitization shall improve the secondary use of healthcare data. The Government of the Kingdom of Saudi Arabia ordered a project to compile the National Master Plan for Health Data Analytics. The Government of Estonia ordered a project to compile the Person-Centered Integrated Hospital Master Plan.

Objective:

This paper maps the problems, approaches, and outcomes of these two distinct projects to find the matching elements that can be reused in similar cases.

Methods:

We assessed both healthcare systems’ abilities for secondary use of health data by exploratory case studies with purposive sampling and data collection via semi-structured interviews and documentation review. The collected content was analyzed qualitatively and coded according to a predefined framework. The analytical framework consisted of three categories: data purpose, flow, and sharing. In the Estonian project, the Health Information Sharing Maturity Model from MITRE (USA) was used as an additional analytical framework. The data collection and analysis in the Kingdom of Saudi Arabia took place in 2019 and covered healthcare facilities, public health institutions, and healthcare policy. The project in Estonia collected its inputs in 2020 and covered healthcare facilities, patient engagement, public health institutions, healthcare financing, healthcare policy, and health-tech innovations.

Results:

In both cases, the assessments resulted in a set of recommendations focusing on the governance of healthcare data. In the Kingdom of Saudi Arabia, the healthcare system consists of multiple isolated sectors, and there is a need for an overarching body coordinating data sets, indicators, and reports on the national level. The National Master Plan of Health Data Analytics proposed a set of organizational agreements for proper stewardship. Despite the national digital health platform in Estonia, the requirements remain uncoordinated between various data consumers. We recommended reconfiguring the stewardship of the national health data to include multi-purpose data use into the scope of interoperability standardization.

Conclusions:

Proper data governance is the key to improving the secondary use of health data at the national level. The data flows from data providers to data consumers shall be coordinated by overarching stewardship structures and supported by interoperable data custodians.