January 9, 2023
Health data is managed today to variable quality, with insufficient investment and commitment to ensuring its quality. Using health data of which the quality is poor or even unknown, results in unreliable findings and decisions. Furthermore, it reduces trust and business efficiency.
Assessing, labelling, and improving the quality of health data is critical for all stakeholders to achieve our collective ambition to scale up the availability of trustworthy, reliable data that can
This Declaration is the outcome of the Health Data Quality: a Dynamic Complexity conference held in Porto on 17 & 18 November 2022. The first international conference ever held on the topic of health data quality. The conference’s objective was to demonstrate the dynamic complexity of high-quality data, as well as for primary and secondary use. The Porto declaration is the result of an interactive conference with over 400 experts, representing multiple -public and industry stakeholders, including key policy-making bodies such as the European Commission, the WHO and a number of national governments.
This Declaration calls on all health data ecosystem stakeholders to join forces to ensure the best possible health data for Europe.
Develop and promote data quality standards and labelling
1. Decision makers and data scientists must work together – urgently – on a European standard for data quality labelling for primary and secondary data use, including provenance and FAIR reuse metadata
2. Multiple healthcare and research funders must be prepared to co-finance the development of these data quality standards, their adoption into labels and products and the upgrade of deployed systems to ensure standardised high-quality, high-value data for all
Develop and certify digital health products to have data quality by design
3. ICT companies, especially EHR system developers, must build in “data quality by design” so that users find it easy to enter high-quality data and can tell the quality of the data they access and use
4. ICT companies, especially EHR system developers, must value the quality, reliability, and trustworthiness of the health data their systems create and process, and certify their products against these criteria
Require data quality labels within all digital health and research products
5. Member States and the European Commission must align their evidence requirements, including data quality requirements, for the approval of digital health innovations within European health systems
6. Purchasers of digital health products and platforms, including EHR systems, must prioritise the adoption of systems that facilitate and label high-quality health data
Invest in educational and organisational change to improve data quality
7. Health and Finance ministries, health insurers and the data-using industry sectors must align their KPIs to join forces to invest in high-quality data in health-related activity. Furthermore, all stakeholders involved should engage in educating and empowering patients (and patient organizations) and the public to capture their own data to a high quality and to encourage its use for purposes they support
8. Secondary use stakeholders must urgently support healthcare organisations with the uptake of education and the organisational changes needed to improve data quality
Develop the multi-stakeholder business case for high-quality data
9. Member States and the European Commission must develop and promote business cases for investment to improve health data quality
10. Member States and the European Commission must establish co-financing frameworks to share out the necessary investments amongst the data user stakeholders.
This Declaration calls on all stakeholders to urgently collaborate on agreeing on the standards for data quality assessment, on scaling up data quality labelling of primary and secondary use data and on strategies for shared investments to improve the systems and delivering training to the personnel needed to ensure the best possible health data across Europe.