Connected Health Alliance CIC
ECHAlliance
The European Connected Health Alliance (ECHAlliance) is the Global Connector for Digital Health, facilitating multi-stakeholder connections around ecosystems, driving sustainable change and disruption in the delivery of health and social care.
ID: 918355124862-52
Lobbying Activity
Response to Legislative framework for the governance of common European data spaces
4 Feb 2021
The ECHAlliance is a global network of Digital Health Alliances that connects 78 countries in Europe, USA, Canada, China, Africa, Asia, the Caribbean and Americas and the Pacific, including stakeholders from government, health & social care providers, companies and start-ups, researchers, insurances, patient groups and citizens.
The Digital Health Observatory (DHO) and The Digital Health Society (DHS) facilitate and promote the transfer of knowledge, experiences and best practices creating a community of knowledge in Digital Health globally.
The ECHAlliance and DHS are partners in several relevant movements under this theme, such as All Policies for a Healthy Europe, Data Saves Lives and projects such as DigitalHealthEurope or Gatekeeper.
Through this myriad of collaborations and sources of community knowledge, in response to the public consultation regarding the Data Governance Act, we would like to point out the following:
Recommendations to the DGA regulators and national authorities enforcing it:
• promote the development and adoption of multistakeholder Compacts regarding responsible data use, transparency, accountability, communication, by including the public (patient and civil society organisations) health funders, providers and health data organisations (public bodies and industry)
• include members of the public in the constitution of the European, national or regional decision-making bodies themselves
• conduct public awareness campaigns to explain to the public the research uses and benefits of using health data.
Recommendations to accompany the implementation of the data altruism concept:
• promote a robust, joint European capacity building program to foster digital, data and health literacy
• foster equal access to digital tools by reducing inequalities, in accordance to the priorities of the Berlin Declaration
• include citizens (not only patients) in the consultations and expert panels for the implementation of the DGA
General Recommendations:
• extend the DGA rules to other organisations other that public health services that fulfil public health services, such as NGOs, as well as organisations providing integrated care, among others.
Read full responseResponse to A European Health Data Space
4 Feb 2021
The ECHAlliance is a global network of Digital Health Alliances that connects 78 countries in Europe, USA, Canada, China, Africa, Asia, the Caribbean and Americas and the Pacific, including stakeholders from government, health & social care providers, companies and start-ups, researchers, insurances, patient groups and citizens.
The Digital Health Observatory (DHO) and The Digital Health Society (DHS) facilitate and promote the transfer of knowledge, experiences and best practices creating a community of knowledge in Digital Health globally.
The ECHAlliance and DHS are partners in several relevant movements under this theme, such as All Policies for a Healthy Europe, Data Saves Lives and projects such as DigitalHealthEurope or Gatekeeper.
Through this myriad of collaborations and sources of community knowledge, in response to the Inception impact assessment of the EHDS, we would like to point out the following:
Regarding Objectives 2 and 3 (page 5):
1. The increase of digital health services (page 3 report) brings to the table a wealth of data that is not strictly health data (at least not in a strict sense) but wellbeing related and RWD that is not fully considered in the current drafting of the report. Further considerations on a framing regulation for RWD and wellbeing data and its inclusion in the scope of the EHDS would enlarge its potential and favour the advance of research on reliability of such data sources.
Field experiments on data sharing governance models that empower citizens are needed for measuring impacts and feasibility and bottom-up approaches necessary to include citizens’ perspectives.
Regarding Objective 1 c) (page 5):
2. To increase citizen engagement, trust is the cornerstone of the equation. However, after engagement, more education is needed for citizens and this requires digital access and a trio of literacies: digital, health and data literacy. A concerted approach on these three aspects is extremely important, as they need to work together to effectively enhance citizen participation and ownership of the digital revolution. A robust, European capacity-building programme for citizens is needed as a transversal stream for the EHDS.
3. Personality aspects and convictions, cultural aspects and differences, age and even the socio-economic context seem to be strong influencers of personal trust on organisations and therefore directly enable or hinder data sharing probabilities. From the survey undertaken under the DHE project, where 936 citizens were consulted, it is clear there is a high awareness of the value of data for the common good, with 80% of the participants fully aware that their data may be of interest for research but a considerable percentage of citizens reveal a significant lack of information on data sharing in the health and care sector. A total of 57% of the respondents did not know who has access and control of their health information; results by age show that older adults (53%) are better informed about data sharing than younger ones (41%) and more eager to understand the topic if they are not aware yet of it. Tailored approaches to citizen engagement to the EHDS are key, through a clustered intervention.
4. Citizen empowerment requires co-creating the solutions to their own societal challenges. Patients have been extremely well represented for many years, but citizens without a chronic condition or an acute disease have not been sufficiently involved in the discussions regarding health data sharing. Broad citizen engagement in the EHDS stakeholders and discussion groups would benefit a consequent implementation.
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