The Health Information and Quality Authority (HIQA) has published a report outlining key factors to inform policy for the collection, use, and sharing of health and social care information in Ireland.1 The report identifies four areas in which progress is needed to develop a robust health information environment that will allow stakeholders to make choices and decisions based on the best available information.

Background
Safe, effective, efficient, and sustainable health and social care systems are dependent on high-quality data and information. Within the context of alcohol and drug use in Ireland, relevant health information may be used to answer key questions related to the epidemiology of substance use and addiction, inform the development of harm reduction strategies, identify areas of need, and direct resource allocation. There are many organisations responsible for collecting and storing health and social care information in Ireland, with more than 85 national data collections. Consequently, there is poor integration of systems and a lack of standardisation of the type of data being collected nationally. Change is needed to improve access to health and social care information for both patients and professionals in Ireland, to promote better use of resources through use and reuse of data, and to increase transparency and choice about how this information is used for primary and secondary purposes.

Source: Health Information and Quality Authority, 2022, p. 9.

Figure 1: Key policy areas for the collection, use, and sharing of health and social care information in Ireland

Key findings
The report was informed by a national public consultation project and public feedback, engagement with key stakeholders, and a review of international evidence. Four key areas of potential transformation were identified: effective engagement; legislative framework; governance structures; and technical and operational requirements (see Figure 1). These four key policy areas are interdependent, meaning that lack of progress in one area will hinder progress in the other three.

1. Effective engagement
People should be involved in decisions about their health information, with a rights-based approach to health information and its use. Eighty-six per cent of the public would like access to their medical records online and 94% want to be informed about possible future uses of their health information. HIQA recommends that effective engagement be undertaken with members of the public and professionals to guide changes that meet their needs. This will involve the development of a national health information strategy and action plan to outline how, where, and when engagement should take place. As new technologies, such as electronic health records (EHRs), are implemented, it is important to engage with stakeholders on an ongoing basis. Hence, these technologies and the information contained within are managed and delivered in a way that is acceptable to healthcare professionals and the public.

2. Legislative framework
The current legislative landscape in Ireland for health information is complex. Existing legislation includes the General Data Protection Regulation (GDPR) 2018 and the Health Research Regulations 2018. The European Commission intends to enact additional legislation that will impact the reuse and sharing of public data. Accordingly, in 2022, the Department of Health announced plans to develop the General Scheme of a Health Information Bill. HIQA recommends a review of existing and forthcoming legislative requirements for health data as well as a review of the legal bases for data processing to address inconsistency and concerns around application of GDPR principles. Planned legislation will also support a centralised approach to the development of national registries. For some registries in Ireland, data are processed on the legal basis of a public task (e.g. the National Drug Treatment Reporting System), while others operate under the legal basis of consent. New legislation will provide for the structured collection of health information in line with international best practice and underpinned by a rights-based approach.

3. Governance structures
There is a need for improved governance structures that support the secure and effective use of health information in Ireland. HIQA recommends that a national organisation with responsibility for health information be established. This organisation should have strong legislative powers and take a strategic role in advancing health information in Ireland. It will have responsibility for development of a national data governance framework and data standards, monitor information-sharing practices in health and social care, coordinate and standardise national datasets, and coordinate a national, secure, linkage and de-identification service for health information. To date, eHealth Ireland, the organisation with ongoing responsibility for delivering Ireland’s eHealth strategy,2 has not been formally established as separate entity to the Health Service Executive (HSE), a critical shortcoming identified by participants during the public consultation process.

4. Technical and operational requirements
Improvements in technical and operational requirements include further implementation of EHRs and a citizen health portal, which allows patients have access to their own health data using an app or website. Currently, Ireland is one of only two countries in the European Union that does not provide citizens with access to electronic records, and consequently disempowers them in managing their own online information and care resources. To implement EHRs and a citizen health portal, adequate investment, effective leadership, appropriate infrastructure, and sufficient and expert operational resources are essential throughout. Furthermore, technical advances in health and social care will only be successful if supported by improvements in relation to data quality, data interoperability, and data security.

Conclusions
Sharing and processing personal information is an integral part of healthcare provision. The Covid-19 pandemic and the HSE cybersecurity breach in 2021 have emphasised the need to improve Ireland’s health information systems and information-sharing processes. This is an opportune time to engage meaningfully with the public and professionals in advance of the forthcoming legislation on health information and to drive transformational change in relation to the collection, use, and sharing of health and social care information in Ireland.

1.   Health Information and Quality Authority (HIQA) (2022) Key considerations to inform policy for the collection, use and sharing of health and social care information in Ireland. Dublin: HIQA. Available from:
https://www.drugsandalcohol.ie/38432/ 

2.   Department of Health (2013) eHealth strategy for Ireland. Dublin: Health Service Executive. Available from:
https://www.drugsandalcohol.ie/32061/