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Bill 52 - Health Information Amendment Act, 2009

Amendment A1

Ms Blakeman: Yes. Thank you very much, Mr. Chairman. This is my second go-round now with the Health Information Act and amendments and reviews of it. I was so interested, actually, that I asked to be subbed onto the policy field committee on health, which was charged with reviewing Bill 52, the Health Information Amendment Act, 2009. I was on the committee that participated in developing the amendments that are now before you.

I have to say that my overriding concern with health information has been the protection of people’s personal health information because it is such an integral part of our identity and how we move through the world, our ability to get a job, keep a job, marry certain people, have a credit rating and a standing in the community, maintain an individual identity. Protection of that and everyone else’s protection of personal health information are critically important in this day and age.

At the same time, we have immense pressure to be more efficient in the way we deliver health care. One of the things that we’re told repeatedly is that we need to be able to share health information about people quicker between health professionals. Indeed, as I’ve often mentioned to this House, there are a number of individuals in Alberta who would find it reassuring to be able to go to a hospital, present to a hospital for health services, and know that that hospital has access to the same information as the clinic they go to at home and that there’s no possibility that there’s confusion over medication or past diagnoses or diagnostic tests they’ve had or ailments they’ve had. The information is all together for everybody to be able to access.

Certainly, for anyone that’s ever been in the hospital, that teeth grindingly frustrating moment when the umpteenth health professional comes in, takes the clipboard from the end of the bed, and starts over from the top with the same series of questions that the last health professional asked you not six minutes ago is very frustrating. You get asked the obvious question: “Is there no way you people can keep track of all of this information? Why do I have to keep giving it to you?”

That’s part of what we’re trying to achieve in electronic health records. The challenge for us is – here’s that tricky word – balance, and I actually don’t know that it is about balance. I think it needs to be about protection of personal health information, first, and facilitation of how that information gets out and to whom, second. That’s my primary cause.

If we go back to the original bill, it is very clear in its opening sections. It sets itself up to say:

The purposes of this Act are
(a) …to protect the privacy of individuals with respect to their health information and to protect the confidentiality of that information,
(b) to enable health information to be shared and accessed, where appropriate…and to manage the health system,
(c) to prescribe rules for the collection, use, and disclosure of health information…

And this is very important.

…which are to be carried out in the most limited manner and with the highest degree of anonymity that is possible in the circumstances.

So collect the least amount of information you can possibly do with, and as much as possible keep that information anonymous. Don’t go walking around, you know, giving out detailed health information with names, addresses, and telephone numbers attached to it. That’s actually set out under the purposes of the bill and has the paramountcy of the protection in there first.

What we had under Bill 52, I felt, did not meet a number of tests around this privacy. What we attempted to do in the committee, having listened to a number of stakeholders that approached us – and I was surprised because I would not tend to view the AMA as a rigorous, progressive, get-out-there group of people, generally speaking. I would have said that they tend to be more, let me say, conservative, not in their politics, necessarily, but in their approach. They were vigorous in how they criticized the bill because they felt it was really going to have a negative effect on the way they were able to provide health services.

Clearly, they felt that the public would not have confidence in the system and would start to withhold health information from them, the primary health provider, and that would cause a breakdown in the system. And I agree. If there is a balance we’re trying to achieve here, that’s the balance: we run the system well enough that people have confidence in the system and will give us their personal health information, and we can in turn provide the health service that is necessary.

How do we maintain or uphold that public trust, that confidence in the system that we’re using? Frankly, when I first started into this, Mr. Chairman, I thought it was all about electronic technology. I thought it was all about, you know, password systems and people not being able to get into certain kinds of information. You know what? It’s not. What we know now, from watching how personal health information gets out there, is that it’s mostly about being able to detect and stop, hopefully in advance, human deliberation, people who are sloppy and access personal health information of other people when they shouldn’t, people who are deliberate about accessing it. Those people wreck the system for everybody.

What are some of the things we’ve learned about how to stop that kind of unauthorized use of personal health information? One of the famous examples – and I think it’s from here in Alberta through our own Information and Privacy Commissioner – is an individual who was having an affair with someone, and his wife was suffering from a major disease. The individual managed to access the personal health records of the wife, who was suffering from cancer, and tracked her progress, one presumes, to be able to judge the likelihood of supplanting the first missus. This, clearly, is not why we collect health information, so that someone can plan their romantic life. I mean, it’s a horrifying, horrifying story. It’s the kind of thing that people make up bad movies in Hollywood about. Unfortunately, it’s not a bad movie. It was somebody’s life, several people’s lives, and it happened here in Alberta. It happened, and it happened under the system that we have.

So the audit trails that are available is one of the ways that we are able to find out and, hopefully, move in advance of worse things happening, that we’re able to get out in front of someone who is accessing personal health information in an unauthorized way. That ability to have those audit trails in place was very, very important, and that’s one of the things that turns up in that first series under A, what we’re calling amendment A. I’m sorry; this is amendment A1, but this is under the section A. Under section 11 it’s striking out clause (b), which was basically getting rid of the necessity of the minister to do a privacy impact statement, which is another tool that we found is very helpful in checking whether this really needs to happen or that person really needs to get access: why are you doing this? If you have to do a privacy impact statement, it gives us, the system, a better sense of whether that is a legitimate access point.

The second section was that the privacy impact statements had to happen before disclosing the health information to a custodian listed in various areas. This was about keeping an audit log in place. The second series, the B series, is around the electronic health record section, and that’s what’s in section 20. The sponsoring member, the chair of the committee, the Member for Edmonton Rutherford, was right. There’s actually a lot in this amendment, but there were a number things we were looking for. One, again, is around people’s privacy. There was the ability of the minister to compel information from doctors and even from doctors’ medical records. Remember, you’ve got two terminologies here: an electronic health record, which is that sort of electronic in the sky stuff, with the diagnostic and the lab results and your prescriptions and what happens to you in hospital all going into an electronic health record. A medical record is what the doctor is writing on in your doctor’s office. So those in many cases are still paper files, but increasingly they’ve got a little electronic tablet, like a laptop, that they’re walking around with, and that’s where they’re making the notes now, with some sort of super transcriber for bad doctor handwriting, one must presume, like a translation program.

There was a clause in there that was going to force doctors to give information over to the minister if the minister asked for it, including information from the medical record, which was the little one that’s taken in the doctor’s office. That was a break point, a tipping point, if you will, I think, for the medical profession, that if people were aware that anything they said to their doctor could end up as part of these records, there just would not be public confidence. So it was important to change that.

There is a new series of how the minister could try and get at that information. At this point I always say to myself: I’m sorry; why does the minister of health need to know my personal health information? Well, for a number of reasons, usually to do with tracking and planning for health care management, you know, some of those census questions we always get annoyed about. Why are they asking these personal questions? Well, it helps for allocation of money and to provide social services in that context, and it’s similar to what is being talked about here. They’re collecting that information so they have an idea that in a population of this age you’re likely to have X number of these kinds of surgeries required, for example. So it helps with health planning, which should help us with our health expenditures, so this would be a good thing.

The other piece that’s covered in this section is the masking provisions. This is something that, no surprise, I was very concerned about because I have heard from a lot of people who for a number of reasons – let me be specific. I’ve worked with a lot of people in the queer community. There are still people in there who are living with AIDS, and they’re doing well living with AIDS. They’re leading productive lives; they’re working in many cases. But they certainly don’t want that information out in the general public, and they need to be careful about that. They need to be careful about who gets that information. As a matter of fact, you know, lots of us have reason to not want to have our health information sort of bandied about out there.

An individual’s ability to mask their information from any one that just looked on the electronic health record was, I felt, an important feature when I started into this. I’ll tell you that I’ve come to the other end of the spectrum on this. I did do a minority report, which is included in the report from the committee and was tabled in the Assembly. Masking means that certain bits of your information literally get masked, like having a piece of paper over it.

Having watched the demonstration of Netcare, I think the masking can give people a false sense of security. If they think that nobody can look at that information for any reason at all, they are mistaken. There’s actually a drop-down menu on the Netcare portal, and you can just click on it. It says: this information is masked. You click on the drop-down menu, and it says: I want to unmask it. Then it gives you half a dozen reasons why you’d want to unmask it: this is an emergency situation; this is a public health situation; I want to; they told me to; they gave me permission to. You just click on the drop-down menu, and, bingo, it’s open. So it’s not masked in the way people think it’s masked. But we had completely lost that provision under what was originally proposed in Bill 52. So for those people that want some kind of masking provision, it is available to them under the amendments that have been brought forward under the auspices of the policy field committee on health.

I think we need a lockbox because that actually does lock up information, and you cannot get it, no matter what. The masking provision, as I say, can be lifted for any number of reasons and without having to go back to the individual that it’s about and say: can I unmask this information for you? That’s why those phrases, those words about collection, use, and disclosure of health information are so important. You need to get very familiar with these in the act because certain things can be done without disclosing it. Certain things have to go back and get your consent to do that. Is it blanket consent or informed consent? All those things get really important.

I’m running out of time again.

Okay. Section C in the amending document is the one that I proposed, and there’s actually another piece on the end compliments of my ND colleague who was also on the committee. One of the things that I learned is that a lot of health information that exists is inaccurate, badly input, incomplete, wrong, or wrong person, and you don’t realize that unless there’s some reason why you have to access your health record and go: oh, my goodness, I don’t have that at all.

I actually had an episode with that, you know, in one of those things you fill out in the doctor’s office: have any of your parents ever had diabetes or heart disease, blah blah blah, and you check all those boxes. One of them had got some wrong information about a health issue I’d had as a young woman. They actually had me as having had cancer. Wrong. But that’s what was in that particular doctor’s file. At one point I applied to get more life insurance, and they make you sign a blanket consent that the insurance company can go look at all your health information to decide if they’re going to give you more life insurance. Right? Okay. Fine.

I kept getting denied, and I’m thinking: “What goes here? Like, ’m healthy, I’m exercising, I lost all this weight. You know, I’m a vegetarian. I quit smoking. Good God, what do I have to do here?” I finally said: “What gives? What’s the problem?” They said, “Well, you know, you’ve got this cancer thing on your file.” I said: “I’ve never had cancer. Where did you get that from?” They said, “Oh, well, from your file.” I thought: gee whiz. So I went back to every doctor I had and said: go look in your files because one of you has got this wrong. I found the one that had it wrong and said: it’s wrong; correct it. That’s the only way I found out. We know that despite all of our best attempts – and you guys know me; I’m pretty picky about information and specificity and accuracy and all of those things. There’s an example of a really simple, everyday life experience that happened to me. That happens many, many times over and over and over again.

The accuracy of the health information they hold is critical. The health information repositories are really the big new bit of this act. I wanted to make sure that you could correct any information that is held by a health repository that is wrong. With the help of Parliamentary Counsel I was able to draft amendments, which were accepted by the committee, that essentially said that if you identified it to a custodian, as I had done – remember, I went back to the doctor and said, “You’ve got it wrong; fix it,” and they did fix it – the custodian of the information would be obliged to tell any health information repository to also correct it. So you could get your whole file corrected. That was the point of that.

Then section D is removing the absolutely draconian fine that was in place and went back and reflected on any doctor who wouldn’t give the information to the minister that the minister was requesting. I think these amendments have gone a long, long way to making Bill 52 much better. It still felt very much like a rushed and very rigid process to me. I think we could have done an even better job if we could have spent more time looking at the bill and reflecting on what amendments were really needed. But I know the chair of the committee was determined to get it back before the Assembly and, hopefully, I think in his mind, get it passed before we rise from spring session. It felt very rushed to me. I think we did good work. I think we could have done better work.

Thank you, Mr. Chairman.