Health committee  Very quickly, as far as the privacy issue is concerned, there is absolutely no reason why we cannot have patients access their personal health information. The legislation is clear in terms of them being the owners, and the providers are custodians.

Health committee  You're right to say that there's a practical aspect to it. With records that are in mixed paper and electronic form, for the patients to practically access it, is an issue. There are fees that are charged to do the photocopying, so there are these systemic practical considerations.

Health committee  I think the 10-year timeframe is a good one. It's not moving as quickly as I would like, and I've been in this for 15 years. We need to reprioritize the initiatives around the referral practices for patients so that the interoperability of records and the flow of information is such that patients have access to that information sooner.

Health committee  That's critically important.

Health committee  Yes, the patient and her informal caregiver.

Health committee  Are you asking specifically around the Infoway infusion?

Health committee  Well, I think as Mr. Girard mentioned, although it was a significant amount of funding, there was always the expectation that there would have to be provincial matches, even down to the local level—in Ontario, the LHINs. Even at the hospital level there would need to be substantial investments to realize that.

Health committee  Yes.

Health committee  Yes.

Health committee  Well, the point I want to make is that I can't actually think of a form of self-care that is more exceptional than home hemodialysis, other than performing surgery on yourself.

Health committee  If patients are able to do something as invasive as home hemodialysis, imagine just managing blood sugars or blood pressure. The point I was trying to make is that patients have this immense capacity if the circumstances are right. Again, these patients are not unique. There are thousands of patients who are doing this around the world now.

Health committee  Up to 25%.

Health committee  No. In the cases of the home hemodialysis programs that you see now, they are conventional machines. As you perhaps can see in one of the photographs, they're designed for a 5'4'' nurse standing in front of the machine to operate it, so initially the patients had quite a lot of difficulty with operating the machine from their bedsides.

Health committee  It's still based out of the hospital setting or the clinics, so the training is done by nephrology nurses. It usually takes six to eight weeks to train a patient on how to perform home hemodialysis. The maintenance and the supplies are all done through the hospital or clinic.

Health committee  I think you make a very good point. We do not really capture the informal caregiver's contribution. That family member who has decided to retire early to care for a spouse in the home—those are billions and billions of dollars of unaccounted for informal caregiving within the system.