Health Data Governance for the Digital Age

5. Summary and conclusions

Implementation

The Recommendation provides a roadmap toward more harmonised approaches to health data governance across Adherents. Overall results of this Report indicate that there are many Adherents that are still working toward implementation (Figure 5.1). Among Adherents with lower scores for dataset availability, maturity and use, the challenge lies in making data available for research and statistical purposes and there is work to be done to develop collaborative policies and practices among government authorities in custody of key health data and considerable work and investments required to improve data quality, linkability and sharing with researchers so that data can serve the health-related public interest. Among Adherents with lower scores for dataset governance, there are gaps to address in data privacy and security protections for key health datasets such as having a data protection officer and providing staff training, access controls, managing re‑identification risks, and protecting data when they are linked and accessed.

The 2019‑20 survey identified a small cluster of Adherents with policies, regulations and practices that foster the development, use, accessibility and sharing of key national health datasets for research and statistical purposes while also having a high degree of recommended health data governance policies and practices in place. Adherents reporting the strongest national health data availability, maturity and use and health dataset governance policies and practices were Denmark, Finland, and Korea. These countries were followed by Australia, Canada, France, Latvia, the Netherlands, Slovenia, Sweden and the United Kingdom (Scotland).

Figure 5.1. Small group of Adherents score highly on both dataset availability, maturity and use and dataset governance

Note: Dataset governance score is the sum or the proportion of health care datasets meeting 15 dataset governance elements and the dataset availability, maturity and use score is the sum of the proportion of health datasets meeting 8 elements of dataset availability maturity and use. See Annex B Tables A.1 and A.2.

Source: Oderkirk (2021[10]), “Survey Results: National Health Data Infrastructure and Governance”, https://doi.org/10.1787/55d24b5d-en.

All respondents experienced some challenges and difficulties in developing national health data governance frameworks. The most commonly experienced challenges were legal restrictions or policy barriers to public authorities undertaking data linkages (16 respondents); concerns with the quality of data that limit their usefulness (15 respondents); and legal restrictions or policy barriers to sharing data among public authorities (13 respondents).

The 2021 survey of Electronic Health Record System Development, Data Use and Governance revealed both shortcomings in the implementation of standards for clinical terminology and the interoperability of health data and emerging solutions including new standards, global collaborative efforts toward global standards and the adoption of common data models. Health data interoperability will remain a significant challenge for the sector in the coming years.

Priorities for further work that emerged from the January 2021 OECD-Israel workshop discussions included the following:

• Insufficient clarity and harmonisation between national health data governance frameworks challenge their implementation within nations and between them.

• Data localisation laws and policies limit cross-border collaboration in health research.

• Conflicts about the appropriate legal basis for data processing: Consent vs. Public Interest – and the scope of “Public interest” – affect countries’ ability to conduct research and streamline data sharing project approvals.

• Insufficient awareness of and expertise in the use of Privacy Enhancing Solutions limit their wider adoption to strengthen data protection and limit their consideration when developing legal basis for data processing or approving data processing requests.

• Necessity of fostering public trust of individuals, communities and societies in scientific research that is in the public interest, through Inclusion, Transparency and Participation.

• Importance of recognising and addressing inequalities in access to data for research, such as when researchers from diverse backgrounds are denied access to data due to payment or credit sharing requirements, and the risks of bias in research results emanating from this.

• Importance of recognising and addressing the consequences of inequalities emanating from potential bias in the data explored, in and of itself, or due to insufficient inclusion of participants from diverse populations.

• Necessity of strong digital identification methods on a national level to support data linkage whilst preserving privacy and security.

• These priorities are consistent with the Recommendation and point to further work that the OECD can do to support implementation of the Recommendation and the monitoring of its impact.

Dissemination

Overall, the Recommendation has been widely disseminated to various stakeholders through various avenues, including in the context of the publication of a booklet introducing and presenting the Recommendation; academic publications, articles and reports; workshops, meetings and bilateral discussions; surveys, policy briefs and country reviews regarding health information systems and governance (OECD, 2019[7]). The Recommendation has also been shared in the context of other international fora including the G7 Health Ministers as they focussed on international collaboration in health data in 2021; the World Health Organization Global Summit on Health Data Governance in June 2021; meetings of the Health Data Co‑operative in 2021; and the G20 Digital Health Taskforce in 2020 work on digital health interventions for pandemic management.

Key points from this Report will be published as a policy toolkit on health data governance to be disseminated as part of the Going Digital Project series of policy toolkits. Aspects of this Report will also inform the Going Digital III Project on Data Governance reports in 2022 on Tangible Responses and Recovery from the COVID‑19 Pandemic; on Data Stewardship, Access and Control; and the Report from this horizontal project on Data Governance. Results of this Report will also inform work of the Health Committee to support greater resilience to public health crisis among health systems; as well as further work in future years to support countries in strengthening their health information systems and the governance of health data.

Other international organisations have recently begun engaging in work toward supporting the cross-country harmonisation of health data and governance and this Recommendation has made an important contribution to their work. This includes recent efforts by the WHO, the EU, the G7, the G20 and the Lancet Commission. The OECD’s continued contributions to the health data governance work of other international bodies helps to assure this Recommendation has a broad impact.

The focus of Adherents over the past five years has been on the implementation of the recommendation at the national level. In the next five years, Adherents are encouraged to disseminate the Recommendation to other levels of government and to non-governmental organisations.

Continued relevance

The health sector remains significantly behind other economic sectors such as transportation, travel, banking and finance, in the interoperability of data. The Recommendation was designed to be technology neutral and robust to the evolution of health data and health data technologies.

The Recommendation has been particularly important because of the global COVID‑19 pandemic. The pandemic shone a spotlight on the capacity of each countries’ health information systems to provide critical information for the public welfare; as well as on aspects of data governance that created obstacles to responding to the pandemic in a timely way. As was discussed in the section on dissemination, the Secretariat is increasingly in demand to present the Recommendation and our findings regarding progress toward its implementation at meetings of international organisations and conferences and to provide support to countries in the review and advancement of their health information systems. Further, the Recommendation and this draft Report are contributing to a new OECD Going Digital III horizontal project to support countries in strengthening data governance and thus is proving its worth to sectors beyond health.

Next steps

It is proposed that the Health Committee and the Committee on Digital Economy Policy continue to support and report to Council on the implementation, dissemination and continued relevance of the Recommendation for another 5 years. This next report could monitor progress in the implementation of the Recommendation through the continuation of the HCQO surveys of the development, use and governance of key health data and health data governance. Further, the OECD should continue the new series of country reviews of health information systems to support countries in their efforts to develop health data governance.

Work could focus on some of the priorities areas that emerged from the January 2021 OECD-Israel workshop discussions, and in particular on three areas that pose challenges for Adherents in implementing the Recommendation and would support Adherents in achieving health information systems that are inclusive and support greater resilience to shocks: 1) increasing the interoperability of health data and data analytics; 2) achieving greater harmonisation of health data governance frameworks for cross-country collaboration involving the sharing and use of health data; and 3) enhancing the sharing of experiences and best practices in health data security in response to the increasing occurrence of malicious attacks on health data.

The CDEP through its subsidiary bodies, will also continue to explore the aforementioned issues and challenges. More specifically, through its work on measures that condition the movement of data across borders, on the economic and societal consequences of these measures, and as it continues to develop further practical guidance in areas such as privacy enhancing technologies, regulatory sandboxes, and digital security risk management. Further, the CDEP will continue to monitor and examine approaches to data access and sharing, data‑enabled competition and market concentration; as well as improved measurement of data, data usage and exchange.

Adherents should also be encouraged to continue implementing the Recommendation and to further disseminate the Recommendation at all levels of government as well as to other stakeholders such as non-governmental organisations involved in processing personal health data. Assessment by Adherents of the impact of their national health data governance framework on the availability and use of personal health data could help them to identify areas where they need to enhance their efforts to implement the Recommendation.