Irish Platform for Patient Organisations, Science & Industry


With a continued focus on the areas of understanding patient data, access to innovation, and patient and public involvement, IPPOSI responded to three public consultations throughout July 2021, including:

Consultation 1: The European Health Data Space (EHDS)

The EHDS is a new initiative of the European Commission for a portal of health data resources across Europe. This initiative is still in an open consultation phase. The EHDS aims to accelerate research that uses health data and to enable individuals to have access to their own health records across borders. There are three sections to the consultation:

  1. Section 1:
    a. Access to and exchange of health data for healthcare
    b. Access and use of personal health data for research, innovation, policy-making, and regulatory decisions
  2. Section 2: Digital health services and products
  3. Section 3: Artificial intelligence (AI) in healthcare

IPPOSI remains an active participant in conversations and policy developments in the area of health data infrastructure across Ireland and Europe. We aim to ensure that the perspectives of Irish patients are involved in policy developments so that these patients can receive the benefits of health data while also having confidence that their data will be protected. On the European Health Data Space, IPPOSI calls for patients to have the right to access their health data in electronic format, have control over their own data, and receive assurances that their data will be secure and that there will be consequences in the event of a data leak. We believe that patients can receive tremendous benefits from the successful management of health data such as better healthcare provisions and a more efficient healthcare system in Ireland.

To view our full submission on this public consultation, click here.

Consultation 2: The Revision of EU Rules on Medicines for Children and Rare Diseases

The EU rules on medicines for rare diseases and medicines for children were adopted in 2000 and 2006 respectively and were designed to improve the treatment options available to the millions of European patients affected by rare diseases and the millions of European children affected by paediatric diseases. The existing rules have no doubt stimulated the research and development of medicines to treat rare diseases and other conditions affecting children, but there are many areas for improvement in the current system. For example, 95% of rare diseases still have no treatment options. The rules have also not ensured that medicines are accessible to all European patients across all EU member states.

One of IPPOSI’s priority areas is to advocate for greater access to innovations, especially for those with rare diseases. We welcome the decision from the EU to revise the rules on medicines for children and rare diseases, and we call for:

  1. Increased levels of early patient involvement in research and development in the area of rare diseases and medicines for children
  2. Support for national and European data infrastructures
  3. The creation of a database of nationally funded research
  4. The development of a joint European assessment process

To view our full submission for the public consultation on the revision of EU rules on medicines for children and rare diseases, click here.

Consultation 3: National Research and Innovation Strategy (2021-2027)

The Department of Further and Higher Education, Research, Innovation, and Science has invited submissions from interested persons and organisations on what they consider should form part of the next National Research and Innovation Strategy that will run to 2027. As a key part of the Government’s Economic Recovery Plan 2021, this strategy sets out the “dual ambition of placing research, development, and innovation at the heart of addressing Ireland’s economic and societal challenges, and building capacity and capability across the research and innovation to move R&I up the value chain.” The new strategy will build upon the lessons of delivering the previous national strategy, Innovation 2020.

To ensure that patients receive the benefits of new and innovative medicines, patient and public involvement are important to consider when developing a new National Research and Innovation strategy for 2021-2027. IPPOSI welcomes the opportunity to submit our feedback as part of this public consultation, and we call for the new strategy to:

  1. Centre the principles of equality, diversity, and inclusion to foster more inclusive and multi-disciplinary research approaches
  2. Enable a legislative and regulatory environment for research that considers and addresses the needs of the research community in Ireland
  3. Support models of collaborative research such as co-production, where researchers work in partnership with patients, caregivers, clinicians, etc.

To view our full submission for the public consultation on a new National Research and Innovation Strategy, click here.

18 August 2021

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