Irish Platform for Patient Organisations, Science & Industry
In December 2021 and January 2022, IPPOSI responded to two public consultations, including:

Consultation 1: The European Commission public consultation on the revision of the general pharmaceutical legislation

On 25 November 2020, the European Commission published the Pharmaceutical Strategy for Europe, which aims to create a future-proof regulatory framework for the pharmaceutical industry and promote research and technologies that reach patients and meet their therapeutic needs. As part of this strategy, the European Commission is evaluating the general pharmaceutical legislation. Through this public consultation, we submitted our feedback and ideas regarding how the legislation has performed so far, how to address unmet medical needs, how to incentivise innovation, and more.

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

Consultation 2: HIQA draft recommendations on a consent model for the collection, use, and sharing of health information in Ireland

HIQA is developing recommendations for a consent model for the collection, use, and sharing of health information in Ireland. Their draft recommendations seek to outline when consent is required from people for the collection, use, and sharing of their information and will follow a rights-based approach that emphasises the protection and promotion of people’s rights and privacy.

In 2021, one of IPPOSI’s priorities was to start a conversation and influence policy around access to health information in Ireland. In September 2021, we released the verdict of our Citizens’ Jury on Access to Health Information, which indicated that the Irish public supports the sharing, collection, and use of health information as long as there are robust safeguards in place. We also surveyed patient organisation leaders and members to understand where their views on access to health information converge or differ with the verdict of the Citizens’ Jury. With this experience in mind, we submitted our feedback to the HIQA public consultation and provided input on how to define ‘health information,’ following a rights-based approach, and HIQA’s consent model.

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

13 January 2022
 

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