Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)

Digital health literacy is critical to fostering trust and safety around the use of health data. For example, the HSE is working with a number of advocacy organisations to ensure that its app can be used by people with a wide range of needs.

It is also seeking to ensure that the app uses inclusive language and takes into account additional requirements that patient groups may need by conducting user research and testing groups to see where people might be experiencing challenges in using the app.

I am not in a position to accept the amendment for a number of reasons. Primarily, section 21 of the Bill empowers the HSE to prepare guidelines to enable patients to access their electronic health record as well as to set out the additional targeted measures to enable persons with a disability to access their electronic health record. These guidelines are to be prepared in consultation with stakeholders, including patient representative groups and the National Disability Authority.

In addition, the European health data space regulation we have discussed previously requires that health data be easily accessible for persons with disabilities, vulnerable groups and persons with low digital literacy. The regulation provides that member states should create targeted digital literacy programmes as well as providing patient-centred guidance in relation to the use of national guidelines, with specific attention paid to vulnerable groups. The digital health authority will be required to publish an activity report every two years and it must contain detail on how it does this. It is also required to facilitate persons with disabilities to exercise their rights under the regulation and to facilitate the submission of complaints, including providing easily accessible tools in this regard.

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