Dr. Iris Elliott:

I thank the Deputy for his questions. As I said, Article 31 needs to be considered in the context of every article. The Deputy raised questions regarding the health, adequate standard of living and social protection articles. As I mentioned, our view is, regardless of whether something is a health matter and, potentially, perceived as a medical and not a disability-relevant issue, we must still have a human-rights based approach to data systems. Those systems operate in a very everyday way. They involve people trying to access a health service or welfare benefits. The EU guidelines are a useful resource because these reference co-operation between institutions and a whole-of-government approach in order that people do not have to give their information repeatedly. In particular, if someone has a lifelong condition, there should be a way in which the burden is not on the individual person but is part of a broader system.

In the context of development of the equality data strategy, it is useful we have colleagues from the health sector. For example, we have people from the Health Research Board and the Department of Social Protection. On our equality data work, we are on the Department of Social Protection's technical advisory group on research and data for the Roadmap for Social Inclusion, which touches on what the Deputy said about the cost-of-living crisis. Obviously, the preamble to the UNCRPD mentions poverty because, self-evidently, poverty disproportionately affects disabled people.

The Deputy's questions speak to the complexity of what we need to hold around equality data and the implementation of Article 31. We need to approach it in a clear, systematic way. Otherwise, the task becomes too large and people are put off even having a conversation. I will go back to what I said about the importance of convening all stakeholders and involving all core Departments, public bodies and DPOs in that co-ordinated conversation. Ireland benefits from the fact there is so much international guidance. There is European-level guidance. For example, when we talk to the HSE or the Department of Social Protection, we are holding them to account as the national human rights institution and the national equality board, but we are also there to assist and to say to people there is guidance. Of course, we do not expect every public body, Department or private organisation to be aware of that guidance. Part of our role as the national human rights institution and national equality body is to be available and to provide support.

From our point of view, members are giving very everyday examples of where the reality hits as regards human rights and equality in respect of their constituents and broader members of the public. That is why the public sector duty has been so important and why we are working through it with all public bodies. We are providing guidance to them. This year, we will provide guidance on the European guidelines and what they mean in an everyday, national context. We are working very closely with public bodies, including the public bodies data protection network, to try to look at things such as the general data protection regulation, GDPR, etc.

There are things we can do to try to change things. My reflection is these are long-standing issues. People with psychosocial disabilities are turning up at accident and emergency departments needing a healthcare service, and because of diagnostic overshadowing, stigma, prejudice or a lack of provision, they are being turned away or their right to access healthcare is not being adequately realised. I cannot speak about those individual incidents but they are part of a broader, general pattern. Sometimes, data feel quite removed and abstract, but if we had proper data systems, we would be able to come up with what is currently happening in addition, as the first question indicated, to modelling and future-proofing, which again is a very strong strategic priority for the commission. Especially following the Covid pandemic, we need to learn the lessons about how we need to future-proof data systems.