EuroHealthNet is the Partnership of public health bodies building a healthier future for all by addressing the determinants of health and reducing inequalities. Our focus is on preventing disease and promoting good health by looking within and beyond the health care system.
Letter about considerations about the European Health Data Space for health inequalities
28 November, 2023
On 28 November 2023, EuroHealthNet sent a letter to the EPSCO Council, which brings together Member States' ministers responsible for employment, social affairs, health and consumer policy.
The letter concerned the Council's work on the European Health Data Space, encouraging the prioritisation of inclusivity, data system transparency, and addressing barriers such as the digital divide.
EuroHealthNet provided a summary of its concerns and suggestions on how to overcome them, as well as attached with references to additional resources. The full letter is available below.
On behalf of EuroHealthNet, the European partnership for health, equity, and wellbeing, I am writing to you in the context of the legislative deliberation on the European Health Data Space (EHDS) during the upcoming Employment, Social Policy, Health, and Consumer Affairs Council meeting, on the 30th of November 2023.
Your role in defining how, where and by whom the EHDS will be deployed and regulated is crucial, as it will determine its potential to either reduce or exacerbate existing and/or future health inequalities. We encourage you to prioritise inclusivity, data system transparency, and addressing barriers such as the digital divide to make this happen. This requires careful consideration of how the health data is collected, shared, and used, as well as ensuring the representation of diverse populations, addressing biases and using it better for public health interventions, and with safeguards for public value creation.
Please find below a summary of our concerns and suggestions on how to overcome them, as well as attached with references to additional resources.
EuroHealthNet and its members stand ready to support you in this work. We appreciate your attention to these crucial matters and look forward to positive developments in the EHDS file.
Yours sincerely,
Caroline Costongs, Director EuroHealthNet
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Public health policy and practice design rely on population data to identify health inequalities, formulate interventions, and enhance health outcomes. This data plays an important role in needs-driven, adequate resource allocation and the shaping of health systems. The EHDS is a crucial initiative that aims to reshape how health data is collected, shared, and used across the European Union’s member states.
While offering numerous opportunities, the EHDS also highlights the growing necessity for regulatory approaches in developing digital health data systems. These approaches should ensure fair representation of the population and equal outcomes in digital data usage. Management and sharing of health data brings significant risks to safeguarding individual rights:
These risks involve privacy concerns, with personal health data becoming more vulnerable to unauthorized access and potential cybersecurity breaches.
Ethical questions surrounding the commercial exploitation of patient information raise issues about the use and ownership of sensitive health data.
The adoption of digital health solutions may inadvertently worsen health outcomes and amplify existing health inequalities.
It's essential to note that these risks extend beyond traditionally vulnerable groups, impacting the society as whole.
From it experience of working in this area from a health equity focus perspective, EuroHealthNet recommends that in your deliberation on the EHDS’ deployment you consider that EU and national governments:
Avoid underrepresentation of certain population groups: The implementation of the EHDS should be carried out in a way that prevents the creation of datasets misrepresenting or excluding certain population groups. In addition, algorithms for data analysis or decision-making can perpetuate or even magnify health inequalities if they are trained on biased or incomplete data. While there are no fixed guidelines on this matter yet, strong data equity (or equality data) principles should be established and accompanied by enforcement mechanism for compliances of such principles. These principles include (among others):
use of disaggregated data to gain a comprehensive understanding of the extent of group misrepresentation to analyse disparities, balance different representations, and anticipate biases;
consider the unique needs of harder-to-reach groups and populations and develop tailored interventions to address their potential underrepresentation; and
promote health equity impact assessments as part of the implementation of EHDS related interventions.
Tackling the digital divide and limited access: Digital divide, encompassing limitations in access to basic digital infrastructures and tools, can hinder full participation in data exchange and restrict related benefits for certain groups in engaging in the process. This divide is closely linked to socio-economic inequalities, where resource gaps can contribute to disparities in usage of digital tools and services necessary to engage in the EHDS. Addressing this divide, by enabling equitable access to adequate means and infrastructures should be a primary focus in implementation of the EHDS. Simultaneously, it's crucial to boost digital health and data literacy across the population. The widespread use of health data and associated digital health apps/technologies, while offering numerous benefits, poses challenges in terms of trust, safety, and appropriate usage. The implementation of the EHDS should prioritise the development of digital/data health literacy programs for individuals and communities to navigate these challenges effectively.
Ensure safe secondary use of data: The current provisions on secondary use of data listed in the EHDS regulation are still broad and vague, with a high risk for commercial exploitation. The current 'opt-out' regime as suggested is also inadequate, placing an undue burden on patients and citizens to understand risks and take delicate decisions during vulnerable times of dealing with illness and health problems. A more specific, evidence-based definition of the expected benefits for citizens and society should be agreed upon. Similarly, clear requirements for the creation of public value, and clear principles for public return on investment should be introduced. Moreover, safeguards should be foreseen to avoid non-legitimate use of health data for commercial purposes (through oversight and control mechanisms as well as proportionate sanctioning).
Use EHDS to strengthen public health interventions: The implementation of the EHDS opens up promising opportunities to develop effective public health measures and more preventative and health-promoting approaches. Enhanced accessibility to health data at various territorial levels would facilitate close monitoring of population health trends, particularly across the social gradient, and enable the implementation of tailored public health programmess as well as more efficient resource planning.
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