Public asked to give feedback on a consent model for the collection, use and sharing of health information

Date of publication:

The Health Information and Quality Authority (HIQA) is asking the public for their feedback on its Draft recommendations on a consent model for the collection, use and sharing of health information in Ireland which will be submitted to the Minister for Health.

Sharing personal information in a secure and controlled manner is integral to providing health and social care. HIQA is developing these recommendations to inform national legislation, policy and strategy for health information as electronic health information systems are progressed in Ireland. The development of health information-specific legislation, as well as the need for strategic leadership and governance for health information, are core requirements to achieve a robust national health information system in Ireland. 

Rachel Flynn, HIQA’s Director of Health Information and Standards, said: “Health information is essential both for managing direct patient care and also for health service planning and management, policy-making and research. It is important that a consent model is put in place to ensure individuals are informed about how their information might be used, as well as the choices they have about this.

“These draft recommendations are based on international best practice and aim to ensure that the public is involved in all stages of the rollout of eHealth in Ireland, and that a strategic approach is implemented to ensure personal information is processed safely and securely in line with individuals’ preferences.”

The paper makes 10 recommendations to outline the situations when consent is, and is not, required for the use of personal information in health and social care, as well as the need to establish legislative and governance structures, and technical and operational capabilities to support a consent model. It also defines key health information concepts and outlines the need for significant public engagement in this area.

The draft recommendations have been published alongside an evidence synthesis document which provides an overview of the current health information landscape in Ireland, and a detailed review of consent models in other countries, which helped inform the recommendations. Currently, the legislation for health information in Ireland is not fit-for-purpose. In comparison, other countries have developed specific legislation or codes of practice to regulate the collection, use and sharing of health information, which creates a common understanding about how to the best use and share information in the interest of patients and the public. For example, in Finland, the development of legislation to regulate the use of information beyond direct care and the establishment of ‘Findata’ facilitates the effective use of health information beyond direct care, while also protecting individuals’ health information by operating in a highly regulated and controlled environment.

Ms Flynn continued: “We want to hear the views of the general public, including people using services, policy-makers, and front-line health and social care staff on these draft recommendations. The public’s feedback on the consent model is essential to ensure it is developed in line with their expectations and needs. It is also important that as eHealth technologies develop, and the potential to use and share health information increases, the rights of individuals in relation to their personal information is openly discussed and assurances provided that their information is used appropriately and shared securely. We hope that this is the beginning of ongoing and meaningful engagement with the public in the area of health information.” 

HIQA invites members of the public to provide feedback on the draft recommendations before the consultation closes at 5pm on Monday, 10 January 2022.

Following the public consultation, the recommendations will be revised. Once approved by HIQA’s Board, the final recommendations will be submitted to the Minister for Health and will also be published on HIQA’s website.

Ends.

For further information please contact:
Marty Whelan, Head of Communications and Stakeholder Engagement
085 805 5202 / mwhelan@hiqa.ie


Notes to the editor:

  • In September 2021, HIQA, the Department of Health and Health Services Executive published a report on the Findings of the National Public Engagement on Health Information which consulted over 1,300 people on the collection, use and sharing of health information. The report found that the public welcomes the move to an electronic health system, but that consent and security concerns must be addressed. The results also highlight that people want to be able to access their own information via a citizen health portal as they feel this would empower them to play a role in their own care and they want to be able to control who can see certain types of information that are considered more sensitive, for example information about mental health. HIQA has used the findings to develop these draft recommendations for the Minister for Health on a model for the collection, use and sharing of personal health information. Find out more about the findings here
  • Last month, HIQA published a paper on the Need to Reform the Health Information System in Ireland. It called for a strategic national health information system to be established, with clear leadership and governance and structures in place, backed up by legislation. Read the paper here
  • Consent for the use of personal health information is a process by which a person expresses that they are willing for their information to be collected, used and shared.
  • Following the consultation, revised recommendations will be shared with an advisory group for final considerations before being sent for approval to HIQA’s Executive Management Team. The recommendations will then go to HIQA’s Standards, Information, Research and Technology Board subcommittee and the HIQA Board. Once approved by HIQA’s Board, the recommendations will be submitted to the Minister for Health.