At the Health Committee (HC) meeting of December 2017, delegates discussed key activities that would take place to develop the Report to Council on the implementation, dissemination and continued relevance of the Recommendation [COM/DELSA/DSTI(2017)1/REV1] and agreed upon a plan which included the 2019‑20 HCQO Survey of Health Data Use and Governance, followed by the 2021 HCQO Survey of Electronic Health Record Systems Development, Use and Governance. The final proposed step in would be interviews in 2021 with national officials responsible for health data governance regarding progress toward implementation. This step was later replaced with a follow-up survey on changes to data and to governance frameworks as a result of the COVID‑19 global pandemic.
Within this plan, the Committee on Digital Economy Policy (CDEP) contributed information to the Report regarding progress and developments in the protection of personal data privacy and security and on national data strategies that are relevant to making continued progress in the governance of health data.
HCQO delegates discussed the proposed draft questionnaire for the 2019‑20 Survey of Health Data Use and Governance at their meeting of 8‑9 November 2018 [DELSA/HEA/HCQ(2018)9]. They also broke into small groups to discuss the opportunities and challenges in developing national health data infrastructure and governance.
First results from the Survey of Health Data Use and Governance were presented to the Health Committee meeting of December 2019 [DELSA/HEA(2019)18]. These early findings showed strengths, weaknesses and challenges in the implementation of the Recommendation and encouraged Adherents who had not participated to take part in the survey in Winter 2020.
First results from the 2019‑20 Survey were discussed during the May 2020 meeting of the HCQO and the delegates discussed the impact of the COVID‑19 pandemic on the development of health data infrastructure and governance [DELSA/HEA/HCQ(2020)1]. Delegates discussed changes in health data availability and governance that increased the timeliness, availability and sharing of data for both managing the pandemic and for research into mitigation and treatment.
The HC and CDEP gathered insights into progress and challenges in the implementation of health data governance frameworks through an international workshop on Health Innovation through Fair Information Processing Practices that was undertaken in collaboration with the Israel Ministry of Health and the Israel Technology Policy Institute on 19‑20 January 2021. Key findings from the workshop have been published (Magazanik, 2022[9]).
The Working Party on Data Governance and Privacy in the Digital Economy (WPDGP), with the support of the Global Privacy Assembly (GPA),1 organised three workshops to discuss how governments have addressed the privacy and data governance challenges in their fight against the COVID‑19 pandemic. The issues arising during COVID‑19 were directly tied to underlying health data infrastructure and governance. The first workshop held in April 2020 focused on the exceptional surveillance and contact-tracing measures adopted by countries and related legal uncertainties on how to enable the collection, analysis, effective anonymisation and sharing of personal data. Workshops in September 2020 and June 2021 focused on lessons learned by governments and on specific data protection and privacy challenges raised by e.g. vaccination programmes and COVID‑19 “travel passports”. Key findings from the workshops will be published in an OECD Report in Q4 of 2021 [DSTI/CDEP/DGP(2021)12].
Following final reviews by the HC and the HCQO, the findings of the 2019‑20 Survey was published in April 2021 (Oderkirk, 2021[10]). The HCQO survey monitoring the Development, Use and Governance of EHR systems was launched in March 2021 and was completed by all respondents in August 2021. Results of this survey will be published in an OECD report in Q2 of 2022.
The brief HCQO survey monitoring Health Data and Governance Changes since the COVID‑19 pandemic launched in June 2021 and results were presented to the Q4 joint meeting of the Health Care Quality and Outcomes and Health Statistics Working Parties and then integrated into this report in October 2021.
Taking into account all of the results of the different surveys and tools mentioned above, a draft Report has been developed:
A the first draft Report was discussed during the joint meeting of the Working Parties on Health Care Quality and Outcomes and Health Statistics on 5 October 2021.
A second draft Report was discussed by the WPDGP at its 22 November 2021, by CDEP at its 1 December 2021 meeting and by the HC at its 2 December 2021 meeting.
Following these discussions, written comments sent by the delegations were included in the third draft Report which was approved by the HC by written procedure on 15 January 2022 [COM/DELSA/DSTI(2021)1/REV2].
Following approval, minor adjustments were made in the Report, at the request of one Member, to the description of its domestic situation. The HC has been informed of these adjustments ahead of the transmission to Council [COM/DELSA/DSTI(2021)1/FINAL].
The Report was noted and declassified by the OECD Council at its 23 February 2022 meeting. A link to the approved Report is included in the public webpage of the Recommendation on the online Compendium of OECD Legal Instruments. Furthermore, in order to support the implementation and dissemination of the Recommendation, a policy toolkit on health data governance will be developed using the key points from the Report and will 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 final report from this horizontal project on Data Governance. The conclusions of the Report will also inform future work of the HC to support greater resilience to public health crisis among health systems; as well as further work in future years to support Members in strengthening their health information systems and the governance of health data.