Draft recommendations on a consent model for the collection, use and sharing of health information in Ireland

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HIQA is holding a public consultation on draft recommendations on a consent model for the collection, use and sharing of health information.

We are developing recommendations for a consent model for the collection, use and sharing of health information in Ireland. A consent model will clearly outline the situations when consent is, and is not, required for the use of personal information in health and social care. This model must follow a rights-based approach, meaning that an emphasis is placed on protecting and promoting people’s rights and respecting their autonomy, privacy, dignity, and their values, preferences and diversity.

These draft recommendations set out a model which outlines when consent is required from people for the collection, use and sharing of their information. The recommendations also include proposed definitions for relevant terms; the legislation, governance structures and technical and operational considerations needed to support the consent model; and the need for effective public engagement in this area. 

It is envisioned that implementation of these recommendations will make the process of the collection, use and sharing of health information clearer, and ensure that people’s rights in relation to the privacy and security of their health information are upheld. It is also anticipated that improved legislation and governance structures in this area will encourage a more appropriate and optimal use of health information to support both direct patient care and reasons beyond direct care, such as effective management and planning of health and social care services, improving the quality of care delivery, and health research. 

What is the public consultation about?

Having undertaken a comprehensive evidence review and stakeholder engagement to inform the development of the draft recommendations, HIQA is holding a public consultation from 22 November 2021 to 10 January 2022. The public consultation gives people the opportunity to provide feedback on the draft recommendations and become involved in the development process by submitting their views to us. 

As these recommendations will apply to a wide range of health and social care services, we welcome feedback from all people using these services, their families, health and social care professionals, advocates, and policy-makers.

How will we use your comments?

We will carefully assess all feedback received and use it, along with other available evidence, to develop the final recommendations which will then be submitted to the Minister for Health. 

How to give feedback?

The fastest way is to complete the online questionnaire.
Your comments can also be submitted by downloading and completing the consultation feedback form below and then emailing your completed form to us at: healthinformation@hiqa.ie. 

Alternatively, you can complete and post the completed form to us at:
Health Information and Quality Authority, 
Health Information Quality Team,
Unit 1301, 
City Gate, 
Mahon,
Cork
T12 Y2XT

The deadline for receipt of submissions is 5pm on Monday, 10 January 2022.

Next Steps

At the end of this public consultation, your comments will be collated and will inform the development of the final recommendations. HIQA will also be running focus groups with health and social care professionals and representatives of patients and service users to further inform the development of the final recommendations. Once approved by HIQA’s Board, the final recommendations will be submitted to the Minister for Health and will also be published on our website. 
The consultation feedback form is available online or in pdf format below.
 

Further Information

HIQA published an international review in 2020 which summarises international evidence in relation to consent models for the collection, use and sharing of health information. An updated evidence synthesis (link to be added) was conducted in 2021 which includes an ‘as-is’ analysis of the current health information landscape in Ireland and a summary of updated international evidence. These papers were used to inform the draft recommendations and ensures that they are evidence-based and fit for purpose in an Irish context. 


As part of the process to develop draft recommendations, HIQA, in partnership with the Department of Health and the HSE, conducted the first National Public Engagement on Health Information to ask the public their views on how their health information should be collected, used and shared in Ireland. The findings of the national public engagement on health information can be found here
 

  • Consultation Feedback Form

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