In the Recommendation, the Council invited the Secretary-General and Adherents (at all levels of government) to disseminate this Recommendation.
OECD Health Ministers welcomed the Recommendation at their meeting in Paris on 17 January 2017, along with a call that the OECD undertake further work to support member and partner countries to further build capacity in this important area (OECD, 2017[8]). The Secretariat informed the public about the health data governance recommendation Q1 of 2017 through the Health Committee’s newsletter and its website page dedicated to health data governance; as well as an article in the OECD Observer (Oderkirk, 2018[11]).
Health Ministers launched the Knowledge‑Based Health Systems (KBHS) project in 2017 to help countries to adapt their health systems to manage efficiently and effectively the vast amounts of clinical, administrative, and other types of data being generated on a daily basis, so that this information could be used to improve health systems performance. The Knowledge‑Based Health Systems (KBHS) project examined how countries could govern health data to take the next steps of extracting valuable knowledge from health data, and use this knowledge to drive positive health system transformation.
The importance of implementing the Recommendation was emphasised within the key messages and findings of the KBHS project which were discussed by the Health Committee at their meeting of June 2019 [DELSA/HEA(2019)12]. The KBHS project findings were published in a report that was launched at a high-level meeting organised by the OECD and hosted by the Danish Government on 21 November 2019 in Copenhagen (OECD, 2019[12]). The high level meeting Health in the 21st Century: Data, Policy and Digital Technology involved health ministers and senior officials in a discussion of the policy and institutional settings needed to extract knowledge from electronic health data and power 21st Century health care systems.
The key findings of the KBHS project and the call for development of health data governance was published as a chapter of the Handbook on Global Health published by the WHO and Springer (Colombo, 2020[13]). The OECD also published a booklet introducing and presenting the Recommendation in the spring of 2019 (OECD, 2019[7]).
Further dissemination of the Recommendation to industry and academic communities was facilitated through publications in academic journals and reports on topics including the need for real world evidence to support the development and evaluation of pharmaceutical products (Eichler, 2019[14]); the need for systematic evaluation of health data governance performance (Di Iorio, 2019[15]); foundations of the development of artificial intelligence (Oliveira Hashiguchi, Slawomirski and Oderkirk, 2021[16]) and opportunities and challenges in blockchain technologies in health care (OECD, 2020[17]).
The HC and CDEP further disseminated the Recommendation and 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 and proceedings of the workshop have been published (Magazanik, 2022[9]).
Specific topics discussed at this workshop included:
Significant national health data governance reforms implemented recently in countries, which included legal and operational reforms to strengthen health data governance.
Safeguards for health data sharing to promote innovation while protecting people’s privacy including ethical review, data de‑identification, administrative, technical and contractual safeguards, and safeguarding cross-border data flows.
Privacy-by-Design and state‑of-the‑art solutions for safeguarding digital health data against unauthorised access and use.
Perspectives of individuals and communities on the rights and interests of individuals, communities and societies regarding data protection and health including discussion of consent and alternative legal basis for the secondary use of patient data for research.
The OECD published a working paper Survey Results: National Health Data Infrastructure and Governance in April 2021 (Oderkirk, 2021[10]) and results related to health data sharing were developed as a Going Digital Toolkit interactive indicator on Trust (OECD, 2021[18]). The comparative results supported countries in the self-evaluation of their own progress toward implementation.
The OECD also supported Members in managing new data privacy and security protection challenges that arose during the pandemic from new flows of health data (i.e. case counts, hospitalisations, deaths, availability of resources, travel and migration, vaccination) and new forms of health data (i.e. smartphone apps, digital vaccination certificates). This included policy briefs in the spring of 2020 on key topics including “Ensuring Data Privacy as we Battle COVID‑19”; “Beyond Containment: Health System Responses to COVID‑19 in the OECD” and “Tracking and Tracing COVID‑19: Protecting Privacy and Data while using Apps and Biometrics” (OECD, 2020[19]).
The need for greater consensus among countries on data governance frameworks was amplified by the pandemic and the OECD has had the opportunity to discuss and disseminate the Recommendation with other international organisations who are seeking to develop principles, recommendations or guidelines related to health data governance.
The G7 Health Ministers at their meeting of June 2021 focussed on international collaboration in health data. In preparation for this meeting, the OECD shared information on the Recommendation and findings from our surveys to support their discussions. The OECD took part in the World Health Organization Global Summit on Health Data Governance in June 2021 which served to announce their plans to build consensus among countries regarding health data as a public good. OECD has taken part in meetings of the Health Data Collaborative which is a collaboration of countries and the WHO that are working toward the development of agreed global standards for health data interoperability. The OECD also supported work of the G20 Digital Health Taskforce in 2020 and contributed to its report: Report on Digital Health Interventions for Pandemic Management. The OECD has discussed the Recommendation with I-DAIR, a new international digital health and artificial intelligence research collaborative and with the Lancet and Financial Times Global Commission (Health Futures 2030). The OECD has also spoken about the Recommendation to health care, industry, government policy, and data standards groups and associations in formal meetings and workshops and in bilateral discussions.
The concerns and challenges facing countries in managing the COVID‑19 pandemic led to the OECD launching a new series of country reviews of health information systems in January 2021 following a discussion of this review series at the October 2020 meeting of the HCQO Working Party [DELSA/HEA/HCQ/HS(2020)2]. The country review series employs the Recommendation as the conceptual framework for the evaluation of country performance and the operational, policy and regulatory reforms recommended by the OECD to reviewed countries are based on the Recommendation.
Specific examples of Adherents’ dissemination include:
The Netherlands’ Ministry of Health, Welfare and Sport commissioned the OECD to initiate a review of its health information system in January 2021 and to provide interim policy recommendations in April 2021 to be able to be considered as part of the agenda of a new government. The focus of the review of the Netherlands is to gather evidence to make informed recommendations of legal, policy and operational reforms to develop an Integrated National Health Information System that supports the policy goals of integrated care delivery; integrated public health monitoring and management; and capitalising on recent innovations and fostering research and development in technologies and treatments. (OECD, 2022[20])
The Korean Ministry of Health and Welfare commissioned the OECD to initiate a review of its health information system in June 2021. The focus of this review will be on developing the health information system needed to improve the performance of the health care system by developing the data need to measure, improve and incentivise health care efficiency, efficacy and equity.
The work undertaken toward the development of the Report and the approved Report itself will be further disseminated through the 2021‑22 OECD Going Digital III project which focusses on data governance. In particular, Module 1 of this project which will be reporting on data stewardship, access, sharing and control across different sectors of the economy including the health sector. The project will disseminate examples of best practices as well as recommendations for policy reforms that support data governance.
The WPDGP, with the support of the Global Privacy Assembly (GPA), organised three workshops to discuss how governments have addressed the privacy and data governance challenges in their fight against the COVID‑19 pandemic. These challenges were directly related to countries underlying health data infrastructure and governance frameworks. The first workshop was held in April 2020 and 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 have been published in an OECD Report [DSTI/CDEP/DGP(2021)12].