Dr. Avril Kennan:

I totally agree. I was very pleased to hear the HSE at the earlier session talking about a patient portal and the fact that it is on the agenda. Certainly, for our member charities, that is absolutely what they will want to see on behalf of the communities they represent, for people to access to their own data. We talk a lot about self-management but how do I self-manage if I do not have my own test results and so on? I once got an accidental referral to an oncologist. It came in the post and of course it was a Friday evening so I had to sit with that referral to an oncologist for the weekend, wondering was there something my general practitioner had not mentioned to me, because I had no access to my own records.

The other thing about a patient portal is that it opens up the potential for patients to put in their own data, things that are important to them such as measurements around their quality of life. That can really add to the richness of the data for research purposes as well.