John Dolan (Independent) | Oireachtas source

I thank Mr. Muiris O'Connor and his team for the introduction to and work on the Bill. It is worth reflecting on the fact that the research, development and health analytics division, which Mr. O'Connor manages, was only established last year. It is great that it has been set up and it is important that its work gets moved on rapidly.

Believe it or not, I am going to come at this from the angle of people with chronic conditions, disabilities and mental health needs. While they may constitute a minority of those who use the health service, they may make up the majority of the use of its services because they are repeat customers and their conditions bring them back more intensely over time. Mr. O'Connor referred to hypothetical personas. Is it possible to put in instead of a persona some particular conditions? This is just my own anecdotal experience over nearly 40 years of being involved with people with disabilities. It was the case 40 years ago that a family that had a baby born with Down's syndrome were told they would get 30 or 35 years out of that little fellow or girl. While those children are now men and women of 35 who still have 20 or 30 years left to live, we know there are things coming down the track with certain other co-morbidities, etc.

In terms of building up a trajectory or a profile of how conditions and people's experience of those conditions move, we have a sense from more developed societies with better health services that one gets a five or ten year window where one can see what is happening.

I know this from my engagements with organisations in Ireland whose work relates to specific conditions such as muscular dystrophy and Down's syndrome and their counterparts in Europe, North America and elsewhere. They see what is happening. It is very important to try to build up these pictures. There is a tension in this legislation which is mirrored in its Title, the health information and patient safety Bill, which also includes the idea of confidentiality and people's confidence. We must get this tension or, to use another word, "balance" right. The health information side of it must not be sacrificed to the other side. The other side must be properly looked after. This is where we will make the gains. I read this morning that the CSO has stated that three out of every five people over the age of 60 in Ireland has a chronic condition and that 13% of people have disabilities of some kind. This figure can be taken as conservative. We need to plan on the basis that it is conservative. People are living longer and surviving more illnesses that would previously have taken them out of this world, albeit with other morbidities and so on.

The Department has set out four objectives. The second is to encourage health research in Ireland. I want to juxtapose this with the third and fourth, which concern the strengthening of patients' rights and the enhancement of patient safety. This is what I am suggesting in my comments on the Title of the Bill, that this is the tension we need to get right on both accounts. If we do not get it right on the patient confidence side, we will achieve nothing on the other side. I will put it this way. I have polio. There are people with other neurological conditions. If one were to pull the files together on the desks of the handful of consultants in this country and put those files into a great machine, one could learn an awful lot - if given patients' gender, age, life circumstance and so on - about the profile of a certain condition and how people's expectations of it and what they can do has expanded over the years. In one way, therefore, we are close to being able to do something yet we get caught. Every time anyone talks about doing something about this, data protection is offered as an excuse. I do not know about data protection in detail. However, the cancer registry has real information about real people. Why is it only used for cancer patients? I am not saying we should not have it at all, but why is this or some similar model not available to help us with all these other conditions?

We also know that as one problem is solved, we get over the crest of a challenge only to find the next peak ahead. We should start planning for these things. We should help organisations and communities that support people with disabilities to self-manage better to have better understandings and work more in partnership with clinicians. Many organisations we call service providers, that is, organisations for people with specific conditions, are on the cusp of having a very powerful role because they have the confidence of the people and the families, they know their situations quite intimately and they can be major advocates at local and regional level.