On March 25, Minister Heather Stefanson introduced, for second reading, Bill 54 The Personal Health Information Amendment Act. This legislation establishes a Research Approval Committee to review all health research involving human subjects being undertaken in Manitoba. My questions to the Minister and my comments at second reading are below [from Hansard].
Hon. Jon Gerrard (River Heights): To the minister: this will establish a research approval committee. Will that research approval committee take over all the functions of the institutional review committees, or only those which relate to access to personal information?
Mrs. Stefanson: So, the research information will be set up by regulation under the act, and research projects, if it's government information that they want currently, they have to go to health–the health privacy committee. Otherwise they will go to the institutional research committee. Now there will only be one committee, so we are streamlining this into one more-comprehensive committee to handle all of those requests.
Mr. Gerrard: The institutional review committees assessed not only access to personal information issues, but they also assessed the quality of the science and they also assessed the ethics, as it related to scientific studies of humans, as might occur with, for example, COVID-related research.
So will this completely eliminate the institutional review committee and the research approval committee will now take over the review, not just of the personal information issues but also of the scientific quality of the proposal and of the ethics, as it applies to the proposal?
Mrs. Stefanson: So, again, there'll be a combination with respect to–under this legislation, there'll be a combination of those committees.
So, the institutional research committee, as well as the health privacy committee will be combined into one committee when it comes to the way research information specifically is handled.
Mr. Gerrard: This research approval committee is going to be a very important committee, and it's surprising that there's not more details in this act.
You know, one would expect that this would be a committee which would have members who are knowledgeable about science and the scientific quality of research; a member at least who's knowledgeable about access to personal information, an individual who's knowledgeable about ethical issues.
And I would suggest that there would need to be at least an Indigenous representative, in part because there are particular issues with regard to research, as it relates to indigenous people.
Mrs. Stefanson: I thank the member for River Heights (Mr. Gerrard) for that comment.
And certainly, we're open, as I mentioned when I answered one of the questions previously, Mr. Acting Speaker, that this will be handled by way of regulation, and so we welcome any kind of feedback with respect to that regulation and, you know, how that committee will be comprised.
Mr. Gerrard: I ask the minister, has consideration been given as to how people will be appointed to or selected for the research approval committee?
Mrs. Stefanson: Again, Mr. Acting Speaker, those kinds of decisions will be made and will be recorded in the regulations that come after these changes take place within this piece of legislation. And so again, I reach out to the member for River Heights, if he has ideas about how that would–what that would look like. I believe that is very important.
Of course, we want to ensure that, you know, it has the necessary professionals and so on that we need on that committee to ensure that we have–and I know the member has mentioned other individuals, Indigenous individuals and so on, and certainly all of that would be taken into consideration–
Hon. Jon Gerrard (River Heights): Several points.
In my experience helping people get access to their personal information, it is often a process which is a little bit more complicated and harder to find exactly what one has to do. So I think that making sure that the information about how to request personal information is certainly something which should be clearer and more widely disseminated and available on websites, et cetera.
I have some concerns about limiting access to psychological tests. I think, in general, individuals often benefit from being explained the results of psychological tests, and can not only benefit from that understanding about themselves, but use that information to improve what they're doing, their abilities, their knowledge, their capacity to participate in a variety of things.
So this aspect of psychological tests–while I understand the concern, I think that there should still be an effort to share results with individuals who've had psychological tests. And not only that, to provide that in the context of information about what that means, and from somebody who's got some knowledge of that person so that it can be explained helpfully.
The establishment of a research approval committee is important; this can work well for the whole province. But there are some concerns, if one has one review for the whole province, that people who are not in Winnipeg, who are in Brandon or Thompson or elsewhere, may be somewhat disadvantaged in terms of accessing that committee or having the help to provide material in the right sort of form that it could be looked at well by the committee.
I've already talked a little bit about the importance of having a committee which has got representation, which is from science and ethics and personal access to information, as well as from–having people with different backgrounds. And I think that's going to be even more important as we move forward and as, I perceive, we will get–is more and more into preventive research, that is, research which may be done more often in the community and not quite as much as we do now in hospitals or intensive-care units. We missed an opportunity, I think, in the COVID pandemic to do some important community-based preventive research, and I think it could have been very valuable.
We've discussed the situation of fees, and I think that the minister has explained that the situation will be that there are not necessarily going to be fees charged. And I suggest from my experience that this is very important where there has been a possible medical error or critical incident, that people have access to their records without cost, because they're very often grieving over somebody who's been harmed significantly–may not be intentionally, maybe accidentally, maybe somebody has died–and it's really important for people to have access to those personal health information records in order to be able to complete the, you know, understanding, mourning process over what has happened.
So, with those few remarks, I look forward to this moving on to committee stage and any representation that may be made at committee.