Wednesday 23 October 1991

Review of Freedom of Information and Protection of Privacy Act, 1987

Council of Canadian Administrative Tribunals

Office of the Ombudsman

Provincial Federation of Ontario Fire Fighters

Social Policy Group

Ontario Cancer Treatment and Research Foundation


Chair: Duignan, Noel (Halton North NDP)

Vice-Chair: MacKinnon, Ellen (Lambton NDP)

Cooper, Mike (Kitchener-Wilmot NDP)

Frankford, Robert (Scarborough East NDP)

Jamison, Norm (Norfolk NDP)

Marland, Margaret (Mississauga South PC)

Mathyssen, Irene (Middlesex NDP)

McClelland, Carman (Brampton North L)

Morin, Gilles E. (Carleton East L)

O'Neil, Hugh P. (Quinte L)

Owens, Stephen (Scarborough Centre NDP)

Villeneuve, Noble (S-D-G & East Grenville PC)

Substitution: Coppen, Shirley (Niagara Falls NDP) for Mrs Mathyssen

Clerk: Arnott, Douglas

Staff: McNaught, Andrew, Research Officer, Legislative Research Service

The committee met at 1545 in room 228.


Resuming consideration of a comprehensive review of the Freedom of Information and Protection of Privacy Act, 1987.


The Chair: I would like to call the first witnesses who I understand are from the Council of Canadian Administrative Tribunals. Welcome. You have up to half an hour to make your presentation. Maybe before you begin, you could state who you are and what position you hold within your organization.

Mr Gosselin: My name is Jean-François Gosselin. I am the chairman of the Council of Canadian Administrative Tribunals. It is known as CCAT. I am also a member of the Bureau de révision de l'évaluation foncière du Québec which is an administrative tribunal in Quebec. My colleagues today are Margot Priest, a vice-chair of CCAT and the chairman of the Ontario Telephone Service Commission. Also with me are Andromache Karakatsanis, a director of CCAT and the chair of the Liquor Licence Board of Ontario, and my colleague Bruce Budd who is a director of CCAT and vice-chair of the Pay Equity Hearings Tribunal here in Ontario.

I am very pleased to have the opportunity to address the committee today and present the brief of CCAT. I would like to give you some background and information about the council and then to outline our concerns and views on amendments to the Freedom of Information and Protection of Privacy Act, 1987.

The Council of Canadian Administrative Tribunals is a national organization of members of federal, provincial and territorial tribunals. The purposes of the council are to research and study matters of concern to the members, to provide opportunities to break down the isolation between members, to improve the education of members and to generally enhance the quality of administrative justice in Canada.

The council is managed by a board of directors, which represents all the jurisdictions of the members. It is governed by an executive committee. In the five years since its incorporation, the council has instituted an annual three-day educational conference, published a regular newsletter, the Tribune, and sponsored the Canadian Journal of Administrative Law and Practice. Current CCAT projects include the establishment of a centre for administrative tribunals in Ottawa that will be responsible for the basic training of tribunal members in administrative law and general procedures. CCAT also undertakes to assess and comment on policy and legislative proposals in the various jurisdictions that may directly affect administrative justice and the roles of tribunals. It is this last purpose of CCAT that brings us here today.

The members of CCAT would first like to say that we applaud the goals of the Freedom of Information and Protection of Privacy Act, 1987. This is a very important statute; not all the citizens in CCAT member jurisdictions have the benefits and protections of such legislation. The twin themes of openness and sensitivity to individual privacy concerns are matters that tribunal members work with daily. Openness and accountability are maintained in the quasi-judicial setting of hearings and reasoned public decisions based on known evidence.

The act sets out the rules of the game for citizens seeking information from their government. It provides predictability and certainty to those who seek information and those who disclose it. We believe that certain rules need to be clarified and amendments made to the act to avoid potential problems for adjudicators carrying out their quasi-judicial tribunal responsibilities.

The specific concern of CCAT about the current Freedom of Information and Protection of Privacy Act, 1987, is its failure to clearly exempt from disclosure three types of information: (1) the notes and comments by panel members taken during the course of a hearing; (2) the record of communications among panel members in reaching decisions, and (3) the draft copies of reasons for decision.

CCAT supports technical amendments to the act that would specifically exempt these documents from disclosure under the act. We believe this is important to ensure that tribunal members are free from pressure that would inhibit the independence of decision-making that is necessary to maintain the integrity of an adjudicative body.

The first issue is members' notes. Panel members frequently take personal notes during hearings. These notes are not evidence and are not part of the record of the proceeding. They are generally not considered to be compellable by the courts.

There is no standard method of note-taking and the form used is whatever the panel members believe would enhance their ability to recall, analyse and assess the evidence. The notes serve as a personal aide-mémoire. The personal nature of the notes often means they are useful or comprehensible only to their maker. Use of the notes by someone else can be misleading since they are usually incomplete and idiosyncratic. The notes themselves would therefore be of little use to someone seeking reliable information about a hearing or a decision of a tribunal.

In a practical sense, making adjudicators' notes available to the public could limit the practice of taking notes or impose constraints on note-taking because of fear of second-guessing about how the notes might be viewed. This deprives the tribunal member of a quick personal reference to evidence that would otherwise have to be laboriously sought in the exhibits or transcript. Where no transcript is kept or available, the likelihood of error is increased when evidence can be forgotten or not remembered accurately. Procedural errors may also occur in long hearings when members cannot easily refresh their memories about earlier testimony or rulings.

If note-taking were constrained because notes were available for disclosure, there would be at least two negative consequences. There could be an increase in the time and effort devoted to decision-making because of inadequate notes for quick reference. This inefficiency will occur at a time when concern is being expressed about delays in adjudication and budgets are being cut. An even more harmful result might be that the decisions will be less thoughtful and more prone to error because the adjudicator is being deprived of the tools needed to do the job. In any event, neither the public nor the general administration of justice would be well served if disclosure were permitted.

Alternatively, making notes available to the public may lead to requests for explanations of idiosyncratic notes and cross-examination of the panel member on their meaning and implications. Does doodling mean the member was not paying attention or does it mean she was carefully assessing the witness's demeanour? Do cursory notes mean the matter was not given weight or does it mean it was evidence that was already familiar to the member? Does the emphasis given a matter at an early point in the hearing when it was first mentioned and noted, reflect the consideration it was given when all the evidence had been received and evaluated? Even the maker of the notes may not be able to answer these questions or decipher the notes after the case is over.

Cross-examination on these points therefore may not be helpful. Even more important, cross-examination would extend and reopen matters that are to be determined by the tribunal and are final, subject to any rights of appeal or review. The benefits of finality and certainty would be undermined by reopening the matter through disclosure and analysis of members' notes.

Our second concern is the question of communications among members. For many tribunals, several members sit on the panels to hear cases and make the decisions. For tribunals that are explicitly required to consider several points of view, for example the tripartite labour boards, the multimember panel is required by statute. The panel members must discuss the case, evaluate the evidence, consider the reasons and reach a decision in order to fulfil their responsibilities as adjudicators.

In some instances, the communications are completely oral and the question of disclosure of documents does not arise. The discussion and consultation among members, the sharing of expertise and the airing of different points of view, however, is often done in memos, written comments and annotations. This is particularly true when members serve part-time and represent different regions and communities in the province. Delays in decision-making may result when members cannot easily communicate in writing.

Frank discussion among colleagues is necessary to permit a fair and reasoned decision to be reached. The inhibitions that might be imposed by a loss of confidentiality would affect the quality of the decision-making. Tripartite panels in particular could be deprived of opportunities for compromise and consideration of various points of view. Where a full exchange of ideas and views is not possible or is inhibited, panels may be making decisions that are inconsistent with those of other panels or that do not fully encompass the policy implications of the issue under consideration. Ultimately, the public in general and the public served by tribunals in particular will not benefit by disclosure of communications among members.

The disclosure of communications among the members would also be of only limited practical use, since they would provide only a partial and potentially misleading view of the decision-making process. As with the notes taken during the course of a hearing, the disclosure of these communications could precipitate requests for cross-examination of the adjudicator to determine the meaning and effect of the comments. The collegial decision-making and sharing of expertise would be undermined by a process that would reopen the matter that had been heard and determined by the tribunal.

Our third concern is the question of draft decisions and reasons. The decisions and reasons of tribunals represent the final statements of the tribunal, subject to rights of appeal and review by the courts or other bodies empowered by statute to reconsider the decisions. The reasons are intended to speak for themselves and tribunal members are not required to explain, defend or comment on them.

Draft reasons are often the vehicle through which members exchange views on what the final decision should be. In a draft, the writer may take a particular point of view or espouse a particular result for the tactical purpose of provoking comment and discussion from the other panel members. Indeed, it is possible to have drafts being circulated from two or more members of the same panel so that a range of views can be articulated for discussion. A draft is necessarily incomplete and may even be misleading in light of the eventual decisions reached by the panel.


The drafting and correcting and redrafting of reasons are an intrinsic part of the decision-making process itself. It is often only through the writing of the reasons that the member or panel reaches the decision. The discipline of writing clarifies the considerations and logic underlying the final decision. The more care that goes into the process, the more likely that a fair and reasoned result will be reached. The reasons themselves are also more likely to adequately explain the rationale for the decision.

Any requirement for disclosure of draft reasons could inhibit the process of careful crafting of well-reasoned decisions. It is only recently that emphasis has been given to the quality and adequacy of reasons and the training of tribunal members in the writing of reasons. Indeed, a primary concern of the Council of Canadian Administrative Tribunals' education program is to help members improve their decision-writing skills. The creation and analysis of draft reasons is an important tool for thoughtful decision-making. Requirements for disclosure of draft reasons can create incentives for not creating drafts and not rethinking and reworking the text. It encourages short, uninformative and standardized reasons that may not fully explore or explain all the issues. We believe that this would reduce the quality of the results and run counter to the enhancement of administrative justice.

In conclusion, we believe that it is important to remember that tribunals function in an open fashion because of the requirements of natural justice and fairness. In Ontario, many of these requirements are embodied in the Statutory Powers Procedure Act. Tribunals are required to make decisions on the evidence placed before them. Most tribunals conduct public hearings and must give the parties the opportunity to be heard, to present evidence, to call and cross-examine witnesses, and to argue the merits of their cases. Even if a public hearing is not held in a particular matter, tribunals must ensure that the parties know the case they have to meet and have a fair opportunity to present their side. The decisions of tribunals are public and may even be collected and published. Written reasons must be provided on request or are required by statute. A variety of appeal or review mechanisms are available, and the courts oversee the general conduct of tribunals in the carrying out of their legislated responsibilities. The tribunal process is not secret or hidden.

A major reason for the establishment of tribunals is to provide easy access to a specialized or expeditious process. Certainty and finality are necessary for this objective to be met. Second-guessing the final decisions of tribunals and rehearing the matter through an examination of the panel members' intent and speculation about the possible meaning of incomplete and misleading documents detracts from the benefits of the tribunal process. It is important that the independence and integrity of that process be protected. Careful analysis of the evidence, aided by notes taken by panel members and frank discussion and thoughtful consideration, aided by draft reasons and other communications by panel members, will provide the best mechanism for ensuring that tribunals can continue to play their assigned role in the administration of justice in this province.

CCAT would therefore respectfully urge that the members of this committee give favourable consideration to reviving the amendment that was proposed in Bill 169 in 1990 that added a subsection to section 65 of the act, stating:

"This act does not apply to notes prepared by or for a member of a tribunal that is exercising a statutory power of decision if those notes are prepared for that person's personal use in connection with a proceeding in which the tribunal is required by law to hold a hearing."

We would also respectfully submit that the act should be further amended to provide for the exemption from disclosure of communications of tribunal members relating to their exercise of a statutory power of decision and to the drafts of written reasons issued by a tribunal exercising a statutory power of decision.

These amendments would, in our view, be consistent with the essential purposes of the Freedom of Information and Protection of Privacy Act. The major arguments for the adoption of freedom of information legislation that were identified by the Williams commission were: "the need to render government more accountable to the electorate; the desirability of facilitating informed public participation in the formulation of public policy; the need for fairness in decision-making affecting individuals; and the protection of personal privacy."

It was acknowledged that these might be values that compete in a given case. Establishment of a legislative scheme, however, provided certainty and permitted values to be balanced in a consistent fashion.

We believe that the value of fairness in decision-making is a prime objective of tribunals and that our members are subject to processes and procedures to ensure this objective. These are consistent with the broader objectives of the act. To provide the certainty of the specific exemptions, however, will in this case foster the fairness that the act is intended to achieve. We hope this committee will see fit to recommend these amendments.

We would further like to express our appreciation on behalf of the members of CCAT for the opportunity you have given us today to state our concerns about the disclosure of certain tribunal documents. We would be pleased to answer any questions that you may have about our presentation. Thank you very much, Mr Chairman.

The Chair: Thank you. We have time for very brief questions. I believe Mr Frankford is first.

Mr Frankford: I guess a lot of note-taking can now be done electronically, like voice recording or electronic notepads, and I presume your members use it on occasions. Do you have any thoughts about how it should fit into this?

Mr Gosselin: Madame Priest will answer your question.

Ms Priest: When we use the term "documents,"

we are using it as it is considered in the act, which I understand does cover electronic documents or computer tapes or something like this. Generally speaking, when we are referring to note-taking, it would mostly be during the course of the hearing, although not exclusively. Most of the time it would be the physical writing. You might, I suppose, make a memo to yourself on a tape recorder as you are reading some pre-filed evidence, but when we use the term "document" we would mean that broadly in that sense as well. It may mean some refinements in the drafting to make sure, but I think as long as that is covered as part of the definition of "document" it would be a drafting issue.

Mr Owens: I have some sympathy with the recommendations you make with respect to margin notes and draft decisions. However, being on the receiving end of some arbitration decisions, I wondered if I was sitting in the same meeting room. How do I ensure, as a participant in this process, that the person I am presenting to is, in fact, understanding what I am saying? I may think I presented the most cogent argument available on the issue, but then the decision comes down with a complete lack of clarity of the thought process. Yes, the act has been followed in terms of the written reasons for the decision, but the logic seems to escape the decision-making process. How do we ensure that without having to go back and look through the notes to ascertain whether there was an understanding?


Ms Priest: The question of improving the quality of decision-making and improving the quality of writing -- there is a whole range of issues. We would assume that you have presented your case beautifully and clearly. It may be that the member has not been well trained in writing reasons. It may be that he or she has not been appointed taking into account the need to express himself or herself clearly in reasons.

It is an art to write these things clearly. I do not think that access to earlier drafts would be the answer to ensuring that. It may confuse you more. Reasons, in a proper sense, do not just mean a piece of paper. They mean something that sets out the rationale for the decision that has been taken. They show that the evidence has been considered. These are all matters that CCAT is very concerned about. These are other problems that can be dealt with in other ways.

Mr Owens: I certainly hold with your suggestions and, as I say, I have sympathy with your suggestion that you send out to your membership some kind of note that we have some concerns about the clarity of decisions and that they need to do whatever they can to help the layperson understand what it is they have set out.

Ms Priest: We share those concerns.

Mr McClelland: Are there some particular examples or circumstances or situations that have resulted in problems or difficulties for members of various tribunals? Part and parcel of that question is, is there a particular group of quasi-judicial bodies that is experiencing difficulty with requests for the particular items that you set out, the notes, personal notes, internal communication draft? Have you encountered that difficulty and is it more of a preventive thing or are there some difficulties in the present instance that may be useful for members of this committee?

Ms Priest: I have not had that difficulty. I do not believe my colleagues have. I have heard stories of such difficulties, of such requests. I could investigate that more carefully and let you know, but essentially it is a preventive thing. We wish to have a statute that sets out a process for access as clearly as possible. But I have heard rumours of problems. If you like, I could ask among my colleagues in the community and let you know.

Mr McClelland: I would appreciate that.

Mr Gosselin: Just to complete the answer of my colleague, I can tell you that in Quebec we had such a problem three years ago. Two colleagues were called to witness before the Superior Court and they were protected by the Freedom of Information and Protection of Privacy Act. Otherwise, they would have been in a position to talk about all the discussions they had had prior to the decision. It was the protection of the act because there is an exemption in the Quebec law that gives them that kind of protection.

It is very difficult to conceive or to imagine as a board member that all the matters which are on the table prior to the decision is delivered can be put in the hands of the party. It is really a difficult thing to conceive of or imagine.

We usually want to feel free to examine the evidence in the file and to change our minds before the decision is delivered. It is important to have that margin of manoeuvre. It is important to be able to change our minds if we think it is necessary to change our minds and change the decision or the projected decision. If the notes or the predecision or the drafts are in a position to be circulated to the parties, with a testimony or something like that, it would certainly change the way we are working now.

Mr McClelland: I understand that in practical terms. I just want to throw this out for your response and see where you go with it. You quite rightly say in your conclusions that the Statutory Powers Procedure Act has certain requirements in terms of fairness in the various documents of law that are embodied therein. How would you respond to an individual who feels he or she is an aggrieved party before a tribunal and then, after the decision, is faced with the sole option of looking, with counsel, at a potential appeal to Divisional Court.

An individual may not be in a position to pursue that remedy in all cases. He says, "I feel strongly that there is a real bias" -- we will not get into a discussion of what kind of bias -- persists that he knows instinctively there was bias in there, "I know it, I felt it," for a variety of reasons. The only avenue available to him at this point is review to Divisional Court, and it may not be within his means to do that.

How do you respond in terms of a social policy framework that says that individual ought not to have the right at least to examine the information that was part and parcel of a decision that may very seriously affect his or her life? The only remedy open to him at that point is to appeal it to Divisional Court. I would be interested in hearing that because I understand where you are coming from. How do you balance that in terms of the concern I would express hypothetically to you?

Mr Gosselin: I am talking about discussions on public evidence in the file. I am not talking about hidden evidence or making a decision on the basis of hidden matters. This is not the same problem. You are talking about the bias that can occur if a particular panel is in contact with some material which is not in the file. That is what you are referring to. There is no problem with that. We are not talking about that. We are talking about discussions between colleagues. We are talking about memos between colleagues, drafts and decisions. You will not see such problems in the matters we are talking about.

Mr McClelland: We are limited for time and perhaps this is not the occasion to join in a debate here, but I am not simply limiting it to what you are suggesting with additional or superfluous information that may lead to bias. I am talking about an aggrieved person who feels the frustration with the powerful systems we have in our society. Sometimes an individual stands virtually alone with all the institution's weight and the weight of society generally supporting the institution that is embodied in the tribunal. He or she says they want that assurance and that is the difficulty I have. I guess that is ultimately what we have to wrestle with.

The Acting Chair (Mr Cooper): I am sorry, but we are out of time right now.

Mr McClelland: You have to let him answer the question if I put the question, Mr Chairman.

Mr Gosselin: With your permission?

The Acting Chair: Very briefly.

Ms Priest: Mr McClelland, part of the problem is that in practical terms I do not think your aggrieved client will necessarily find satisfaction. Let's say the client goes through my notes. They will not find rude comments. I do not do that, but let's say I do not take any notes for half an hour's worth of testimony. Does that mean I was not paying attention?

Mr McClelland: Quite the contrary.


Ms Priest: Maybe I was paying very close attention. We have an excellent court reporter. I mean, none of these things can be known by looking through the notes. If they look at an earlier draft -- I find that in the process of writing reasons occasionally you can go 180 degrees in order to get the clarity of the thought. If I cannot write, something out there is a problem. It usually means the ideas are not clear, but that would not necessarily give the answer, the problem being that your client in that case will not necessarily -- in fact, in most cases, I would suggest -- would not find the solution in examining these documents. I will also undertake to try to provide you with that other information.

Mr McClelland: It is just a question I put to you for your assistance.

The Acting Chair: On behalf of the committee, I would like to thank you for coming today.


The Acting Chair: The next presenters will be from the Ombudsman's office. Good afternoon. You will be given half an hour for your presentation. You can use the full half-hour for your presentation, but we would appreciate it if you would make it a little shorter and allow time for questions and comments afterwards. Could you please identify yourself for the record and then proceed?

Ms Jamieson: Yes, good afternoon. Bonjour. Sago, in my language. My name is Roberta Jamieson and I am the Ombudsman for Ontario. I appreciate very much the opportunity to appear before you today. There are two separate matters I want to raise for your consideration and they have to do with amendments which might be made to the Freedom of Information and Protection of Privacy Act. Are you referring to it as FIPPA? Is that acceptable? Fine, because I will be using it a number of times in the presentation.

My first interest has to do with the repeal of a section that used to be clause 42(m) of the act. That was repealed on January 1, 1991.

First of all, before I speak to that, let me refer you to a section in my act, subsection 20(1), which really requires any member of a government organization to furnish any information to the Ombudsman, and to produce any document or things which in the Ombudsman's opinion relate to any matter under investigation.

Now, that seems very clear. However, in case some people might interpret that to be in conflict with the provisions of FIPPA, section 42, which deals with exceptions or with cases where disclosure of personal information is permitted, listed the Ombudsman as an exception in clause 42(m). Similar exceptions were also made for the offices of the Auditor General, the archives of Ontario and Statistics Canada so that personal information could be made available.

While you might think that subsection 20(1), the section I read at the outset, is sufficient direction to an official that information must be disclosed to the Ombudsman in the course of her investigation, I welcomed 42(m) because it helped me assist public servants to understand my role. From time to time when we get a complaint my staff might contact a public servant so that a matter brought to me could be resolved early on -- often it is done by telephone -- only to find that the official is uncertain whether he has the authority to release information to me. In clause 42(m), listing me as an exception helped to relieve any lingering doubts.

However, clause 42(m) has been repealed and now the question is raised in the minds of some officials whether it is now the Legislative Assembly's intent that personal information not be made available to the Ombudsman. I cannot believe this is the case since it would make it untenable for an Ombudsman to perform her legislative mandate. It is hardly likely that the assembly would have intended to have the Ombudsman appeal to the Information and Privacy Commissioner in order to obtain information which the Ombudsman already has the statutory power to obtain. However, the possibility of an unfortunate confrontation exists so long as there is room for the head of a government organization to believe he or she has the authority to refuse information the Ombudsman has deemed necessary to conduct an investigation.

I am not even certain whether the Ombudsman would be considered to be a person within the meaning of the act so that I can seek an appeal. Even if I were, it would be inordinately cumbersome if I were obliged to go through an appeal to get information I have been receiving since the office was first created 16 years ago. None the less, I am finding doubts are beginning to rise again. There have been a few challenges citing the removal of clause 42(m) as justification. I have prevailed in each of these discussions, but there have been delays and unnecessary confusion. I can see no public interest which is served by its removal, and I can see the avoidance of confusion as sufficient reason to leave it in.

Therefore I ask the committee to consider recommending to the assembly that there be a provision in the act which makes it clear that personal information required by the Ombudsman is exempted from the prohibition against disclosure set out in the act. That could be done in a couple of ways. You could reinstate 42(m), or through a discrete or separate section you could explicitly set out that no part of the act shall be interpreted as limiting the powers of the Ombudsman as set out in the Ombudsman Act. That is one.

I mentioned there were two matters I wanted to place before you.

Mr H. O'Neil: Do you want to deal with that first, Mr Chairman, or should we --

Ms Jamieson: As you wish. The second one does --

The Chair: Does it tie in?

Ms Jamieson: Yes, in some ways.

The Chair: Okay.

Ms Jamieson: The second relates to the ability of the Ombudsman to maintain confidentiality with respect to information I have received under provisions of the act, including information I got through an investigation. As you know, the people of Ontario are able to come to me with complaints and issues about acts or omissions by the public administration, including public servants, over 80,000 of them, and interestingly enough including all administrative tribunals, agencies, boards and commissions. They come to me with their complaints and issues with the assurance that the matter will be dealt with confidentially.

Without this assurance I fear many members of the public will not come forward with their complaints and government agencies will resist disclosing information to the Ombudsman. So that this assurance can be given, the protection provided in the Ombudsman Act is very broad. The confidentiality provisions in fact are a vital hallmark of my work. In fact, there are prohibitions in the Ombudsman Act which prevent me or my staff from disclosing information we have received in our official capacities. That is set out in a number of sections of the act and indeed in regulations accompanying the act.

Section 13 of the act, for example, limits the information I can disclose to only that in which my opinion ought to be disclosed to establish my recommendations and findings. The requirement to maintain confidentiality is so complete in my act that under one section, 25a, neither I nor my staff can be called to give evidence in a court hearing with respect to information that has come to my knowledge in the course of investigation. That kind of privileged relationship is, I believe, essential if the Office of the Ombudsman is to have the highest possible credibility with the people of the province.

Confidentiality is particularly important because the Ombudsman has also been given extremely broad powers of investigation, including the ability to summon and examine on oath, and also a broad mandate. With this in mind, and given the understandable need to foster candour on the part of persons involved in Ombudsman investigations, it is not surprising that the Legislature has emphasized confidentiality as essential and in the public interest in the discharge of my duties.


Yet, probably inadvertently -- I am certain it is inadvertently -- the Legislature has created a situation in which information that I cannot be forced to release even by court order can now be released through FIPPA. The information which I receive is usually personal information, of course, because the act provides that I do not have jurisdiction to investigate a complaint unless the person bringing it to me is personally affected by the action he or she is complaining about.

Recently, the Information and Privacy Commissioner was asked to determine whether a ministry should be required to disclose a document in its files which it had received from one of my predecessors, a document which he had relied upon in arriving at tentative findings. The document had been provided by my predecessor to give the ministry an opportunity to provide its comments. That is part of the usual process: We begin the investigation; we hear from the ministry involved and its views of the complaint being put forward; we do our homework, and I formulate a tentative report. If it is a report that supports the complaint, I provide it to the ministry and ask for their views. Do they have more information? Have I misunderstood something? Has something been missed? It is a document that is provided in the course of investigation, in the process of my doing my work, but it is a tentative report only.

Because the document that was provided at that time contained some very sensitive information, the Ombudsman expressly reminded the ministry by letter that the documents we provided to it had to be kept confidential. Nine years later, disclosure was sought by a person who was not a party to the original complaint nor a person who had supplied information to the Ombudsman in the course of the investigation. The commissioner released his decision in September ordering the ministry to disclose to the appellant certain portions of the Ombudsman's documents.

I am seeking judicial review of this decision. The principle of privacy which is upheld by Ombudsmen all over the world and the power given to me in the Ombudsman Act to determine what information ought to be released compelled me to do so.

I have every respect for the commission and the FIPPA commissioner's discharge of its mandate. I am concerned, however, with the overriding public policy questions this particular case raises. If the release of the documents were to stand, those who provide me with information could no longer be assured that the information is confidential.

Until this matter is resolved, I find myself in a very difficult situation. On the one hand, I am obliged to ensure that information provided to me is kept confidential. On the other hand, I am obliged by subsection 19(3) of my act to provide government organizations with certain information solely for the purpose of engendering an appropriate response by them to my tentative findings. That information can now be the subject of an order of disclosure to a person who is not a party to the investigation.

I am sure you will agree that it is most unfortunate that an officer of the Legislature should be placed in this kind of dilemma. I have, as a result, been obliged to cease providing my tentative findings in writing. Instead, meetings are held with appropriate staff in which the tentative findings -- that is, my report that I referred to earlier that I give to the government organization which says: "This case has been brought to me. It appears as though I may support this complaint. This is what it looks like. These are my conclusions. These are my recommendations. Is there anything more you would like to say to me about this information? Are you prepared to offer and accept the recommendations now and settle this matter?" -- it is really a document in process. Now we have to present it verbally so the organization has the opportunity to comment. Those presentations, of necessity, are now lengthy. The material is often voluminous, complex and technical.

I am conscious that this necessary procedure does not give the governmental organization involved an opportunity to give careful review of my tentative findings, conclusions and recommendations. This procedure also causes delays and frustration for members of the public. Obviously it is my hope that this dilemma is soon resolved so that I can resume the normal, fair process.

I mentioned earlier that I thought the current situation was inadvertent. I cannot find anything in my examination of the legislative record which indicates that the special mandate of the Ombudsman was considered in the most recent amendments to the legislation. I note that in 1979 when the Williams commission considered this problem generically, it made a list of all the statutes which contained confidentiality provisions. It then set out the criteria which a confidentiality provision must meet if it is to be exempted from FIPPA.

FIPPA did include such legislation as the Commodity Futures Act and so on in section 67. These provide for extraordinary powers of investigation similar to those of the Ombudsman Act. Somehow, however, although the Ombudsman Act was on the original list and although it fits the criteria, it was not included in the final list, and there appears to be no explanation for the omission. Surely it is obvious that the Ombudsman must have at least the same exemptions from FIPPA that have been extended, for example, to the Ontario Securities Commission.

The mandates which the Legislature has given both the Information and Privacy Commissioner and the Ombudsman are designed to increase public confidence in government accountability. In fact, in some provinces the Ombudsman's mandate also includes responsibilities similar to those of an information commissioner. If the two mandates are not to conflict at the cost of decreased public confidence, it appears necessary that the Legislature confirm that the Ombudsman Act and FIPPA are intended to work co-operatively.

The Legislature has already provided in subsection 50(4) of FIPPA that the decisions of the commissioner are not subject to review under the Ombudsman Act. It seems to me that what is needed now is for FIPPA to include provisions which will allow the Ombudsman to continue to uphold the high standards of confidentiality with respect to documents addressed to her by members of the public and by governmental organizations. The essential strength of the Ombudsman is the assurance that she is neutral and independent. The Ombudsman must be able to ensure that communications with her by all parties, public and government alike, will be held in the strictest of confidence.

Surely it cannot be the intent of the Legislature that the Ombudsman be obliged, quite properly, to withhold confidential information from a disinterested member of the public and then to permit that same person to obtain that very information through FIPPA.

I would be very pleased to offer the committee any collaboration I can to assist in providing the Ombudsman of Ontario with the ability to maintain confidentiality, so that I can continue to perform the mandate the Legislature has given me in a fair and equitable manner.


Mr Owens: My question is regarding your initial comments. I am curious to know -- if you know, actually -- why clause 42(m) was repealed.

Ms Jamieson: In fact, I do not know. I was not consulted and did not find out until several months after it had been repealed that in fact this had occurred.

Mr Owens: Mr Chair, we have Mr Frank White with us. I am wondering if Mr White could address that question.

Mr White: If you take a look at clause 42(e) of the provincial Freedom of Information and Protection of Privacy Act, it says, "An institution shall not disclose personal information in its custody or under its control except...for the purpose of complying with an act of the Legislature."

There were four acts listed under the subsection that required the production of personal information, and the Ombudsman has mentioned that one of those was hers. At that time the government felt it was redundant, because that section covered the Ombudsman, the Provincial Auditor, Statistics Canada and quite a few other statutes of the Legislature.

Mr H. O'Neil: So are you saying there is really no problem there, then, that in any case which the Ombudswoman brings up, whatever, she is covered?

Mr White: Yes, by the disclosure of personal information where another statute requires it, that allows it in this clause, 42(e). There must be about 100 other statutes -- it is not just these four that we are dealing with -- that require the disclosure of personal information. One could probably be the Occupational Health and Safety Act. Many ministries have acts that require the disclosure of personal information, and this clause 42(e) would allow that. If you take a look, it also includes an act of Parliament, so that is why the Statistics Canada reference was removed.

Ms Jamieson: If I could just speak to that in response, I am aware of clause 42(e). I am also aware that section 42 begins with the word "may."

There is a discretion, and although clause 42(e) is in fact what we do use, what we do cite, having clause 42(m) there made it abundantly clear and avoided a lot of the difficulty we are encountering now.

That is why I said in the presentation that, while we have prevailed, the repeal of clause 42(m) has forced people to ask themselves why clause 42(m) was repealed if it did not signal something about provision of information to the Ombudsman's office. So while I agree with the position put forward on the interpretation of clause 42(e) -- we do point to it, we do utilize it in our discussions with officials -- nevertheless, the lack of clarity caused by the repeal of clause 42(m) is causing me great difficulty.

The Chair: Mr White, did you want a further point of clarification?

Mr White: I guess we are having a difference of interpretation. It says, "An institution shall not disclose personal information in its custody...except"

where another statute requires it. Our advice, all the publications that are issued interpreting the act, would in fact -- I think a few of them might even cite the Ombudsman Act as one where this section would apply.

So really it is, I guess, a difference in interpretation right now. We certainly would say that the Ombudsman Act applies with clause 42(e), if anyone asks, if it is a question of whether it is clear or not. I do not have anything else to add.

The Chair: Any further questions? Mr O'Neil.

Mr H. O'Neil: You are saying you have had a lot of problems. How many specific problems would you have had with this particular section?

Ms Jamieson: In the last week about three.

Mr H. O'Neil: When you were not sure of the interpretation of it, did you call the freedom of information people and get clarification?

Ms Jamieson: I am sure of the interpretation of it.

Mr H. O'Neil: But in other words, how did you handle the three problems when you had a doubt about them?

Ms Jamieson: It takes time to explain, to convince, to convey, to persuade officials that they ought to comply with the Ombudsman Act, they ought not to take a signal out of the repeal of clause 42(m) and they ought to provide us with the information. That is why, when I spoke in my presentation about the fact that we have prevailed, I said it takes an incredible amount of time. I am not certain why it was repealed.

Mr H. O'Neil: Maybe we should ask again why it was repealed. You had better stay up an extra night.

Mr White: It was felt that those sections were redundant because in fact they were repeating what clause 42(e) said about another statute requiring disclosure. It listed a few that required disclosure but it did not list all the statutes that required disclosure.

Mr H. O'Neil: So you are saying that you do not feel there is a problem with section 42 or the other disclosure matters you mentioned.

Mr White: In interpretation, from my point of view, in terms of communication there may well be. We might be able to work something out in terms of sending something to ministries to inform them of this interpretation, to make it clear that this would apply. I cannot discuss the experiences of the Ombudsman. If she has had problems with the act, then I will listen to her experiences.

Ms Jamieson: The other thing is that I have 31,000 people a year coming to me. If I have to spend a lot of time straightening out questions like this, a lot of people will be waiting for service. That troubles me. I wonder if I could take one minute --

The Chair: Mr Owens has a question.

Ms Jamieson: I am sorry.

Mr Owens: Perhaps you were going to answer my question, but I was wondering, how much time is added? You have had three cases this week. Presumably you could have resolved them this week. Are they still ongoing as a result of the difficulties you have had?

Ms Jamieson: Yes, they are not sorted out yet. Often these are line managers; these are not always senior officials. They will look it up in their book and they will be confused. They are more confused now because of the recent ruling, which I referred to in my second point, that has been made by FIPPA about the disclosure of information.

That is not exactly the point I was going to speak to. I wonder if the Chair would permit me to raise a matter. As I came in, you were chatting with members of administrative tribunals. I heard the member here who raised this last question. raise a question of information, and also a member on this side as well. If I could just clarify for the members, if any member of the public is dissatisfied or concerned about an action, an omission, a decision, etc, made by any administrative tribunal in the province, the Ombudsman has the jurisdiction to review those complaints. I just wanted to clarify that matter, because it was referred to earlier that the only recourse available was to go to court and seek judicial review. In fact, I do have such a mandate.

The Chair: Thank you. One quick question, Mr Owens.

Mr Owens: We heard testimony last week from two community legal clinics that were involved in a situation where counties had requested the names of recipients of social assistance in their counties. The privacy commission ruled in favour of the county, indicating that these names were going to be used in the conduct of their duty. I think 42(d) is the exact clause that was quoted. Is that an appropriate case for you to look at? Should we recommend to the folks who may be involved that instead of going through the court procedures, they should in fact come to you to look to have that ruling overturned?


Ms Jamieson: If they are dissatisfied with the ruling made by the commissioner under FIPPA?

Mr Owens: That is right.

Ms Jamieson: No, there is a specific subsection -- I think it is 50(4) -- in this act which provides the fact that I cannot review the decisions of FIPPA. That is the irony I referred to at the end of my presentation. While we have spent some time ensuring that there is balance in terms of the discharge of FIPPA's mandate and my review, we have not spent the time ensuring that I can do my job without the review of FIPPA interfering with the discharge of my responsibilities.

That is why the second point, which I cannot emphasize strongly enough, really makes the discharge of my mandate untenable. If I cannot provide governmental organizations with a tentative report so that they can respond, hopefully accept the recommendations or comment on them, it is extremely difficult for me to do my job. That is why I really cannot be strong enough in requesting that the committee turn its mind to this matter. Again I volunteer that if I can be of any assistance in chatting about the drafting and so on of acceptable amendments, I will be happy to do that.

The Chair: Thank you very much for coming along here this afternoon and making your presentation. As with all presentations, the committee will take your arguments and weigh them very carefully when we begin to do our deliberations on amendments to this particular act in the coming weeks.

Mr McClelland: While our next group of visitors is getting ready, I wonder if I could just touch on a matter of order. I note that it is almost 5 o'clock and there are three groups. My understanding is that the House leaders have agreed to a vote and there will be a division at 5:45. It concerns me that if we maintain the schedule, the witnesses who have come here to appear at 5:30 will not be called until 6. I wonder if you might address the logistical problems. I do not know how we are going to handle that, but I would hate for people to be waiting and then feel they are not welcome. I am concerned about the three people from the Ontario Cancer Treatment and Research Foundation.

The Chair: Like you, I am concerned that we hear all witnesses who come forward today. If there is a vote at 5:45, maybe we would adjourn for a recess until the vote is over and then resume immediately after the vote and continue with the hearing.

Mr McClelland: We are prepared for that.


The Chair: The next presenter is from the Provincial Federation of Ontario Fire Fighters. Please state your names and the positions you hold in your organization. You have up to one half-hour to make your presentation, but it would be nice to leave some time for some questions.

Mr Kostiuk: My name is Andy Kostiuk. I am the chairman of the Provincial Federation of Ontario Fire Fighters safety committee. Garth Dix is a regional director for the same organization.

The Provincial Federation of Ontario Fire Fighters wishes to thank the standing committee on the Legislative Assembly for the opportunity to make this presentation. We solicit the support of this committee in changing pertinent sections of the Freedom of Information and Protection of Privacy Act, 1987, so that firefighters will have the right to obtain medical information to the extent that a disclosure is necessary to determine if emergency health care workers have been exposed to a communicable disease for the purposes of testing, treatment and counselling, if needed.

We hope to prove to this committee that we have a need and a right to be able to determine whether or not we have been exposed to a communicable disease during the performance of our duties. As well, we will show that what we request is being readily accepted in the United States.

We have read the Freedom of Information and Protection of Privacy Act, 1987, and find it to be a confusing document. I might add that if even the Office of the Ombudsman finds it confusing, obviously it is confusing to us; we are just firefighters. It professes to allow individuals more opportunity to obtain personal files that institutions or governments may hold, yet provides the means for institutions to prevent access to information that is required for the protection of emergency health care workers.

We are not alone in our confusion, as can be seem from the attached letter in appendix A. I will not trouble you by reading it, but it is from the chief medical officer of health, Dr R. Schabas. It cites the Freedom of Information and Protection of Privacy Act as the reason that firefighters are unable to obtain confirmation or denial of exposure to communicable diseases.

We recommend the following changes to sections 21 and 42. We do not pretend to be lawyers or legislative experts and therefore make these suggestions in the context of what we think will provide our members with the protection we seek. If it can be reworded or we have missed other pertinent sections that require change, we would accept the help of this committee in making the necessary changes.

Under subsection 21(3), it reads, "A disclosure of personal information is presumed to constitute an unjustified invasion of personal privacy where the personal information, (a) relates to a medical, psychiatric or psychological history, diagnosis, condition, treatment or evaluation."

We would like to add to that, "except to the extent that disclosure is necessary to determine if firefighters, police or ambulance attendants have been exposed to a communicable disease for the purposes of testing, treatment and/or counselling."

Section 42 reads, "An institution shall not disclose personal information in its custody or under its control except...."

We would like to add, "(f) disclosure of information through the medical officer of health to a firefighter, police or ambulance attendant of exposure to a communicable disease occurring while performing rescue or providing emergency medical care."

These recommendations are supported by members of the Public Safety Services Liaison Committee, which is made up of representatives from the following organizations, including ourselves: Ministry of Health, emergency health services; Ministry of the Solicitor General, the fire marshal's office; Ontario Professional Fire Fighters Association; Ministry of the Solicitor General, policing services division; Ontario Association of Chiefs of Police; Ontario Association of Fire Chiefs; Provincial Federation of Ontario Fire Fighters; the Police Association of Ontario; Ministry of Labour, industrial health and safety branch; OFL/Ontario Public Service Employees Union, which represents ambulance attendants; Ministry of Health, public health branch, and Municipal Fire Department Instructors' Association.

We understand that the Information and Privacy Commissioner will not make policy decisions regarding the freedom of information act until it is tested in court. Unfortunately, we cannot afford to jeopardize one of our members by waiting to test this act in court.

We also understand we may still have a problem with section 38 of the Health Protection and Promotion Act, but that remains a battle for another day. The opportunity exists today to clear up the Freedom of Information and Protection of Privacy Act. We submit that firefighters are having problems with the current act, given any of the following three possible scenarios.

Example A is a car accident victim who receives emergency medical care on the street by firefighters who must extricate the victim from the torn and twisted metal of a car. In the course of the extrication, a firefighter cuts himself and is exposed to the patient's body fluids. He and his department try to determine whether he has been exposed to a communicable disease or not but are blocked by a cloak of secrecy from hospital personnel.

The victim is taken to hospital and determined to have a communicable disease, by the attending physician, who must report this matter to the medical officer of health as required by the Health Protection and Promotion Act, sections 25 and 26. Presently, the attending firefighters would not be contacted by the medical officer of health because this would be considered a breach of the Freedom of Information and Protection of Privacy Act, clause 21(3)(a).

If we change the example to an HIV patient, the medical officer of health would seek out persons having intimate contact with the patient and advise treatment, counselling and testing. The firefighters would not normally be contacted. In this same scenario, the ambulance attendants would be prevented from contacting the firefighters directly if they found at the hospital that a contagious disease was involved because, again, it is a breach of the Freedom of Information and Protection of Privacy Act. We have an example of that in appendix B, which is a letter from the union representing the ambulance attendants.


Example B: Firefighters respond to a 911 tiered response to a child suffering convulsions. Because of the need for immediate action, universal precautions are not used. The patient is taken to hospital and diagnosed as having infectious meningitis. Again, firefighters may not be contacted because technically it is a breach of the Freedom of Information and Protection of Privacy Act to do so.

Example C: Firefighters, police and ambulance personnel respond to an accident where one of the emergency services learns that the patient has HIV. They are technically prevented from passing that information to the other services unless the patient's care requires that information be exchanged. In most accident cases the communicable disease is the secondary problem for the victim yet the primary health concern for emergency workers.

I have been directed by the membership of the PFOFF at the annual conventions in June 1990 and June 1991 "to establish a communications procedure between emergency medical service personnel to ensure that all firefighters are made aware of any infectious disease they may be exposed to and seek the Ontario fire chief's assistance in this endeavour."

The Ontario fire chiefs do support our position and have acknowledged it in writing, which is appendix C. They have also made a presentation to this committee. Unfortunately, the Freedom of Information and Protection of Privacy Act, 1987 and the Health Protection and Promotion Act, 1983 are alternately presented as obstacles, depending on the government agency we approach. When we began this endeavour in December 1990, I expected that this was a simple matter of informing the government of an oversight and having the matter corrected.

In searching for the person or committee that could effect change, we have contacted the Minister of Health, participated in meetings with Ministry of Health staff, participated in meetings with the public safety services liaison committee, written the Information and Privacy Commissioner, and have written Premier Bob Rae directly. We are awaiting his reply. Our letter to him is contained in appendix D. We have also written to Paul Gardner, the director of corporate policy division, Ministry of Health, to protest proposed changes in HIV testing protocols that would allow anonymous testing. Our letter is contained in appendix E.

We have met concerned individuals in all government agencies who are sympathetic to our cause, but none yet with the authority to make the required changes, although we believe that, through the public safety services liaison committee and the support we have received from the emergency health care division of the Ministry of Health, changes in the Health Protection and Promotion Act are possible.

The Provincial Federation of Ontario Fire Fighters supports the concept of universal precautions in regard to communicable disease, and we promote this within our membership. However, as firefighters, we respond to situations that at times render universal precautions ineffective. An example is auto extrications where sharp metal may tear latex medical gloves.

I have attended an auto accident during a medical response where the victim was drowning in her own blood. I had the choice to take the time to don medical gloves that were underneath my bunker gear used for firefighting or take action to save the patient's life. Needless to say, I was exposed to a considerable amount of blood. This is not an unusual circumstance, and we respond to situations where decisions are made in a matter of seconds that affect people's lives. Sometimes, for the sake of others, we do not have the chance to exercise universal precautions.

As well, it is the nature of our work that we we are involved with a great deal of physical activity. The result is that most of our members will have some form of hand cut, either fresh or healing. We therefore have a concern for possible or direct contact to HIV-contaminated blood.

Studies by the National Fire Protection Association in the United States has led it to develop standard 1999 for protective clothing for emergency medical operations because existing latex gloves, for example, were originally designed to protect the patient from the health care worker and are not strong enough to protect the emergency health care worker from the patient. No gloves are currently manufactured to this standard, but they likely will be in the near future. This is good news but will not totally eliminate the possibility of communicable disease exposure.

We recognize that the number of HIV patients in Ontario limits our professional chances of exposure and we are not paranoid regarding this risk. We are aware of the Ministry of Health's statistics which we have attached as appendix F. We note, however, that two firefighters have contracted AIDS in the United States after exposure to HIV-positive patients during rescues: one in Florida and one in Oregon. As well, the World Health Organization predicts 40 million people will be infected with the HIV virus by the year 2000. This comment was made at the seventh international conference on AIDS held in Florence, Italy, June 16, 1991.

The calm reflections of professional detachment are possible until one has a concern that he or she might have been exposed to a HIV-positive patient because there are doubts that the present system affords the firefighter any reliable protection from infectious disease. We simply want the right to know if we have been exposed. The right to know helps timely treatment, prevents further transmission and would ease our members' concerns for possible transmission of communicable disease to their families. As further proof that our concerns are legitimate, I submit three American examples of laws that support in practice what we have been trying to accomplish since December 1990.

Example 1 is from the state of Rhode Island, and is an amendment to their Health and Safety Act:

"The General Assembly finds and declares that by reason of their employment firefighters and emergency health technicians are required to work in the midst of and are subject to exposure to infectious disease; that after such exposure, firefighters and emergency technicians are not informed of such exposures; that firefighters and emergency medical technicians so exposed can potentially and unwittingly expose co-workers, families and members of the public to infectious disease. The General Assembly further finds and declares that all the aforementioned conditions exist and rise out of the course of such employment."

The next section is strictly definitions and I will skip that.

Notification of infectious disease: Under section (a) "If while treating or transporting an ill or injured patient to a licensed facility, a firefighter or emergency medical technician comes in contact with a patient who is subsequently diagnosed as having an infectious disease, the licensed facility receiving the patient shall notify the employee of the individual's exposure to the patient.

"(b) Such notification shall be made within 48 hours or sooner, of confirmation of the patient's diagnosis.

"(c) Such notified employee shall contact the licensed health care facility to determine the infectious disease to which he/she has been exposed to receive appropriate medical direction for dealing with the infectious disease.

"(d) Notification made pursuant to this section shall be conducted in a manner which will protect the confidentiality of the patient, and firefighter and emergency technician."

I will skip to a summary of example 2, which is that the American federal government has recently passed the Ryan White Comprehensive Aids Resources Emergency Act of 1990. The purpose of this law is to enable emergency response workers to learn that they have been exposed to an infectious disease while providing emergency medical care. Emergency workers need this information in order to get early intervention medical treatment, and to take precautions necessary to prevent further transmission of the disease.

Covered diseases: They are still working on the list of infectious diseases to be covered, and the method by which they deal with it is that the public health officer for each state, usually the Secretary of Health, must name a designated officer for each employer of emergency response workers to serve as an intermediary for all notifications under the law. The designated officer must be someone who is an employee or officer of the individual fire department or other emergency response agency, and should be someone trained in the provision of health care or in the control of infectious disease.

Routine notification: Hospitals will be required to notify the designated officer of transporters of any emergency patient who is found to have an airborne, transmissible through air, infectious disease.

Notification by request: Firefighters who believe they could have been exposed to infectious disease, either airborne or blood-borne, must report the incident to their designated officer with as much detail as possible. If the designated officer feels an exposure could have occurred, he or she will contact the hospital where the patient was taken and supply all the details of the incident. If the hospital agrees that exposure was possible, the hospital informs the designated officer as soon as possible, but not later than 48 hours after receiving the request if the patient in question is known to have an infectious disease that could have been transmitted during the specific incident.

The hospital retains the right to disagree with the designated officer that an exposure could have occurred. If the hospital states that there is insufficient information, the designated officer must either try to obtain additional information or appeal the hospital's decision to the local health officer, who may overrule the hospital."

Confidentiality: All medical information related under this provision must be kept strictly confidential.


I will skip to the Florida example which should be listed as example 3. The Florida law allows testing of patients for HIV, and as reported in the National Fire Protection Association Journal, January/February 1991, Florida Governor Bob Martinez recently signed a bill into law that allows medical personnel who have been exposed to a patient's blood to request the patient be tested for HIV antibodies. The bill had received unanimous support in the Florida Legislature. For testing to take place, medical personnel would have to have been significantly exposed to a patient's blood. If the patient refused to be tested, a test for HIV could be conducted on blood samples taken earlier. If the patient refused to be tested and no blood samples were available, blood would not be drawn unless circumstances constituted a medical emergency.

In conclusion, you can see other governments have dealt with the emergency worker concerns without jeopardizing individual rights to privacy. All we ask is the same consideration by our government.

The Chair: Thank you very much for your presentation. Questions? Mr McClelland.

Mr McClelland: I was going to say it is pretty straightforward and I do not have anything to add, other than to say thanks. It is laid out well and I appreciate the resource material you have appended to it. It is useful stuff. Thanks.

Mr Owens: Would you be able to provide to the committee the documentation behind the two case studies you have mentioned?

Mr Kostiuk: Yes, we could.

Mr Owens: I would appreciate that. My second question is, what happens with the patient if a firefighter or an emergency medical person is HIV positive himself or herself and is involved with a patient? Is it your expectation also that the patient should then be informed that the firefighter or the ambulance personnel who they dealt with was HIV positive?

Mr Kostiuk: That would be a reasonable position in our opinion.

Mr Owens: In terms of how the Health Protection and Promotion Act works, and I do not have a great familiarity with the act, if a patient comes into the hospital with one of the "reportable diseases," is it not the duty of the doctor to trace the contacts, especially if they have come in through the emergency services?

Mr Kostiuk: Actually, under the present law, under the Health Protection and Promotion Act, the doctor is required to report that to the medical officer of health for the jurisdiction he is in. If the person lives in another jurisdiction, that medical officer of health passes it to the jurisdiction that is involved. But the medical officer of health then is required, for certain diseases or if he feels there is a real hazard, to track down that person's activities.

In case of AIDS or HIV, the medical officer of health would trace all the people that person has had intimate contact with, but if the person had arrived by ambulance and had been treated at an emergency scene by firefighters, police and ambulance, there is no requirement at the present time for that medical officer of health to go back and trace all those emergency care workers who would have been exposed as well.

In the course of a fire department's investigation -- and so far there have been a lot of people who probably put their jobs on the line, because we have had co-operation from the coroner's department, from doctors and ambulance personnel who are all technically in violation of the Freedom of Information and Protection of Privacy Act. If a fire department works hard enough at it, makes enough phone calls, contacts the right people, usually somebody will break down and give us the information. But in reality they should not. We accept their help and appreciate it, but they are technically in violation of the Freedom of Information and Protection of Privacy Act. There is no requirement right now under the Health Protection and Promotion Act for them to come back and contact us, and in most cases they will not unless we go after them.

Mr Frankford: Just for clarification, you are not just talking about HIV.

Mr Kostiuk: No, that one always gets the most attention because there is no cure, but there are a host of other ones, including tuberculosis, infectious meningitis, hepatitis B -- all those are a lot more contagious than HIV is, by the way.

Mr Frankford: Historically, do you have any knowledge of the situation with tuberculosis and would that situation, whatever it was, have been changed dramatically by the Freedom of Information and Protection of Privacy Act?

Mr Kostiuk: Actually, up to this point, from my own example -- and it varies across the province, obviously -- in Metropolitan Toronto, because of our close relationship with the department and ambulance services, it probably has not had a dramatic effect because they have carried on with their co-operation. That is not to say the same thing is happening throughout the province, because there are smaller communities where the firefighters are not getting that information, they are just drawing a blank when they go to the well for information. People are saying, "We can't give it you." The privacy act is the reason they cannot. In Metro, it has not been a big problem yet.

Mr Owens: I am just wondering if this is even the correct act to be dealing with this request. I am wondering if it would not be better captured under the health promotions and protections legislation. I understand this act is open for review, but in terms of its proper placement in order to provide effectiveness, do you think it might not be better placed under the Health Protection and Promotion Act?

Mr Kostiuk: The reason we would like it clarified here, where this act is now open and health promotions is not, is that they are alternately used as reasons for not getting it. We are having ongoing discussions with the Ministry of Health and we have some allies in that organization in many places who are working with us to maybe make a policy change in the Ministry of Health to allow us to get that information. So I think we can make changes there. It is just so that now, when we get changes there, they do not come back and say, "The freedom of information act prevents it." It is a question of which comes first.

Mr Owens: Just one more quick question. Your organization spoke to us last week and brought similar concerns. I raised the question with respect to what the firefighters' association is doing to ensure that the firefighters receive the proper counselling and family support, because of the kind of devastation of that news, whether or not the person is infected. I think you mentioned that yourself in your presentation, just the simple fact, "I have been involved with a person with HIV," whether it is real or not. What kinds of things are you doing to ensure that the firefighter, the emergency worker, receives the proper counselling?

Mr Kostiuk: The answer to the question is that the fire marshal's office of Ontario set up the critical incidence stress debriefing team. Some big departments have their own employee assistance programs and in those you have stress debriefing. The smaller departments that do not can now contact the fire marshal's office. They send out debriefers or put you on to medical authorities so that kind of counselling can take place.

Mr Owens: Immediately?

Mr Kostiuk: Within a day's time, sort of thing, within a phone call. It takes some time for them to arrive -- no more than a day or two.

The Chair: I was wondering if Mr White would like to clarify the point raised by Mr Owens as to whether this is the appropriate place to address the questions raised by the Provincial Federation of Ontario Fire Fighters.

Mr White: Actually, I think it was a very good comment. One thing, for instance, the provincial Freedom of Information and Protection of Privacy Act and the municipal act do not apply to hospitals, they do not apply to doctors' offices. So there are only certain organizations, for instance the chief medical officer of health, that would apply to the Ministry of Health. If you are looking for some wider direction to health care workers, I think you would have to go to the Health Protection and Promotion Act.

We could also look at section 42e again that we were discussing with the Ombudsman, where another act allows the disclosure of personal information. It is authorized under the FOI act, but that is what you get in a general purpose act, because there are, I would guess, about 50 to 75 statutes that authorize the disclosure of personal information. Rather than listing all those in a provincial act -- and a similar situation is probably in the municipal freedom of information act -- the easiest way is to go to the separate statutes and allow the disclosure through the separate statutes.

Mr Owens: Am I to take it then that these folks are currently in a position to have that information disclosed to them? Is that my understanding of what you are telling me?

Mr White: I am sorry. Could you repeat that question?

Mr Owens: Is it my understanding from what you are telling me that these folks are currently in a position to receive that information?

Mr White: I do not know what the Health Protection and Promotion Act requires. I think you would look there for your authority to disclose communicable disease information right now.

Mr Kostiuk: We agree with his position. That has been told to us before. Unfortunately, right now there is no act that gives us the authority to request that. It would require us going through a private member's bill or something, which would be quite time-consuming.

The Chair: Thank you for coming along and making your presentation this afternoon. We will certainly take your comments into consideration when we get around to debating proposed amendments to this bill.



Mr Latchford: My name is Vance Latchford, and I am the principal of the Social Policy Group. While not wanting to draw attention to myself in particular, I would advise the committee at this time that by reason of disability I am not able to read my notes and am therefore forced to speak to you off the top of my head. So the comments I am about to make to you will not necessarily be included in the notes, although I am hopeful I can remember enough to touch upon what my notes do say.

I want to start off by saying it is due to Mr Owens's interest that I am here today. He had expressed a particular interest in hearing representations from myself and others from, I guess, my level within society with respect to the impact of fees and the fees provision under the Freedom of Information and Protection of Privacy Act, 1987. While I have comments with respect to fees, there are some other things I want to address as well.

Along the same lines, I want to take this opportunity to thank the staff of the Information and Privacy Commissioner for their substantial assistance to me in terms of providing me with quite detailed background information when I sought it, without requiring me to wait 30 days and without charging me any fees. That same thanks is also extended to the clerk of your committee and his assistant. Without the assistance of those individuals I have just named, it would have been very difficult for me to assist the groups I work with, let alone come and make a presentation to you. I would like to note that for the record.

In terms of freedom of information, it is perhaps useful to spend a few seconds on what I do. In essence, I work with low-income groups who do not have any money, and therefore I do not make any money from those groups. I am on a disability pension, so any money that is due for fees comes out of my own pocket, because the groups do not have money to pay.

I think it is important to revisit the purpose of the act we are reviewing here. The purpose, I think, is to make information available, and not only available but I think it needs to be made in a timely fashion as well. The provision of information to groups who do not have money to pay for it is in fact in the public interest because it reduces "us and them"

-ism between the groups and the organizations or agencies that provide services to them.

Where I do a fair amount of work with public housing tenants, a lot of the anger and frustration arises from misinformation provided by housing authority staff to tenants. It is after spending about $400 to access public housing manuals that I have discovered it is in fact information that is not correct that is being provided to tenants. I am not talking only of tenants. People on social assistance or people who do not have money to avail themselves of this act ought to have equal access to the information this act could perhaps provide them with. I will get in a few minutes to recommendations of how you might facilitate that.

I will give you an example of something I did in Regent Park in 1989. In Regent Park there was a substantial problem with security -- there still is -- with drug dealers, etc. At the same time, the local housing authority, both behind closed doors with me and also in public meetings with the tenants, was repeatedly saying, "We don't have the money to do the repairs you suggest need to be done,"

and so on. My use of the Freedom of Information and Protection of Privacy Act aided myself and other tenants in Regent Park to become aware of Ontario Housing Corp policy that requires local housing authorities to comply with local bylaws. A search of the city of Toronto's local housing bylaw yielded the information that the Regent Park buildings were not in compliance with the city of Toronto bylaw.

A three-page presentation was made to the Mayor's Task Force on Drugs in 1989, passing to it the one sheet of paper that outlined the OHC directive to local housing authorities to comply with local bylaws, together with the relevant sections of the city of Toronto building standards bylaw. From then on, the city of Toronto, which is much more capable and has vastly more resources available to it, was able to bring some pressure to bear not only on the local housing authority but I think also the provincial government. As a result of that, a couple of million dollars anyway has been and is currently being expended in Regent Park, hopefully improving the lives of the people who live there and also the staff who must work there.

It is also important that people who lobby government or sit down with government staff to discuss issues with them be well informed about the issues they are discussing. It is to that end that I have spent a considerable amount of time with this legislation, and I must say it is complex legislation. From time to time I have had some fairly serious debates with freedom of information and privacy co-ordinators who choose to interpret the legislation one way or another, and because it is legislation and because it is written the way it is, it is subject to interpretation.

What needs to happen is that some change takes place that sees information being generated at the front end so the information can be classified at the front end as being either accessible or exempt in the first place. I would include all classes of information except personal information; for example, a housing authority file ought to be kept confidential, other than made available to me.

Proposals on changes to be made in the housing authorities or proposals for changes to be made to the welfare system, etc, ought to be available, not only because people who are affected by the systems may have comments or suggestions that could be of help to the government, but because people who are external to the users of the system and external to the government may have solutions or ideas that could be of value.

To tie things down so that you have to wait, I would say, an average of 45 days to get any kind of documents out of the government when you ask for public information really impedes the process and makes it adversarial. While the intent initially was perhaps co-operative, I think the legislation and the way some people use it has made it an "us and them" kind of thing. It has certainly resulted in my spending an inordinate amount of time reading common law and legislation and talking to people about, "Gee, how do I get that thing?" as opposed to saying, "Gee, what is the impact of that thing and how can we as users or recipients assist in developing a system that makes more sense and that is better for the people concerned?"


A couple of words about compliance: Compliance in the main is there, but I think there are some difficulties with compliance, such as delay and not disclosing information because people believe it is not disclosable. I think there ought to be serious consideration to reworking the legislation so that the freedom of information and privacy co-ordinators are given a bit more authority to tell people in the various ministries, "You're taking too long in replying to a request,"

or, "The information you are choosing to withhold is not information that you can withhold, disclosure is warranted,"

in whatever case it may be.

At the same time as increasing the authority of the freedom of information and protection of privacy co-ordinators, I also recommend that training be increased, not only of the co-ordinators but also of the people who must act in response to the authority that is delegated to them by their respective minister or executive director, whatever the case may be.

Let's talk about the question of fees. The fees are too much; 20 cents a page is a bit out of line, I think particularly when we are looking for stuff that we all know can be produced at half a cent to a cent, maybe two cents a page. I am talking about policy manuals and background papers and minutes of boards or whatever. That sort of information is, I would submit, best placed on a CD ROM or some similar electronic medium that might be available through the reading rooms of ministries or perhaps the Toronto Reference Library or some other such central location so that people could go every six months and perhaps look up the Ontario Housing Corp board minutes, for example, if they wanted to, or the Social Assistance Review Board decisions or whatever, and take from them what they see fit and not take in what they do not want. Clearly on that sort of information the respective legislation for those different institutions makes it clear that certain parts of those institutions and parts of the operations of the institutions are public in the first place. Let's get that already public information out of the way so that ministry staffs are not having to deal with each request as if it were, "What can we deny first," and then talking about what can be disclosed.

I do not have any more comments at this point. I do not know if there are any questions.

The Chair: First of all, let me apologize to you, Mr Latchford, on behalf of Steve Owens, who had to leave to go to another meeting, but I believe I have some questions.

Mr Frankford: I think more a comment than a question. I would really like to compliment you and thank you for coming, because I think it gives a very concrete example of how access to information is used in very beneficial social ways. Apart from what information should be available, I really like your bit about the media and your reference to CD ROMs. As you say, the technology is there to make things very easily available and I am really very pleased that you brought that up on your own.

Mr Latchford: If I just might respond quickly, I think in my work over the years in working with groups, it has become increasingly important to me that I not be the carrier of problems or gripes, but rather someone who can help both parties, I guess, or sides look to solutions. Obviously there is a cost involved, so that was the reason for my looking at that solution. Also, I own a couple of computers.

The Chair: Thank you, Mr Latchford, for coming along here this afternoon and making your presentation. When the committee presents its report to the House, you will receive a copy of that report, along with all the other people who have presentations to the committee.


The Chair: I would ask the witnesses from the Ontario Cancer Treatment and Research Foundation to come forward, please. Thank you for coming along here this afternoon. Sorry we are running somewhat late. That seems to be always part of the process. Would you state your name and the position you hold within your organization for the record, please?

Dr Holowaty: My name is Dr Eric Holowaty and I am the director of the Ontario Cancer Registry. I am responsible for the overall operation of the registry, including security concerns and requests for access for the purpose of research. With me today is Dr Aileen Clarke, who is vice-president and head of the division of epidemiology and statistics at the OCTRF, who was previously the director of the registry. Also with me is Dr Derek Jenkin, who is vice-president and chief executive officer of the Toronto Bayview Regional Cancer Centre.

I understand it is customary at these hearings to have one person only make the presentation, but I would like to share this task with Dr Jenkin. I would like to present our foundation's view of the impact of the Freedom of Information and Protection of Privacy Act on the Ontario Cancer Registry.

The Chair: We generally like everybody to participate in the proceedings. It may have been a tradition in the past -- I am not sure of that -- but everybody here today is welcome to jump in at any time and give their two cents' worth.

Dr Holowaty: Thank you. Dr Jenkin will present our foundation's view on the implications of this legislation on patient care in our regional cancer centres. I will not present the entire brief, as I have distributed it to you, but I will present approximately half of it.

The Ontario Cancer Treatment and Research Foundation, which I will refer to subsequently as the OCTRF, was incorporated in 1943 by an act of the provincial Legislature to conduct a program of diagnosis, treatment and research on cancer throughout Ontario. Included within the objects of the OCTRF, are the adequate reporting of cases and the recording and compilation of data, with the provision that the data be used for medical and epidemiologic research. This objective is met through the establishment and maintenance of a province-wide cancer registry, known as the Ontario Cancer Registry, or the OCR for short.

The OCTRF is a schedule 2 agency and does not fall directly under the Freedom of Information and Protection of Privacy Act. If those who supply the registry with cancer patient information, currently on a voluntary basis, fell under the provisions of the act and were curtailed from sending information to the registry, the effect on the registry would be disastrous, negating most of its usefulness because of incompleteness of registration.

I want to provide more details about this concern, but first I will begin with a very brief description of the operation of the Ontario Cancer Registry. It has been operated by the OCTRF since 1965 and it is a vital element of cancer control in Ontario. Literally hundreds of requests for information are filled each year from a broad array of agencies and individuals. Appendix B describes the users of the Ontario Cancer Registry and provides more detailed information about well over 100 requests we have filled from the provincial government since 1983.


The Ontario Cancer Registry is one of the largest population-based cancer registries in the world. In the year 1989 alone, almost 40,000 new cases of cancer were diagnosed in Ontario. It is anticipated that this number will increase by a further 50%, so that by the year 2000 there will be approximately 60,000 people newly diagnosed with cancer. This rapid growth in the burden of cancer in Ontario has major implications for those planning cancer care services. It also serves to illustrate a very useful purpose of the OCR, namely, to project the future burden of cancer.

The OCR employs a unique method of cancer patient registration, based on computerized record linkage techniques for linking cancer patient files that were originally prepared for other purposes. There are four of these files. They include all hospital separation records with a diagnosis of cancer, and these are supplied by the Ministry of Health; all pathology reports with a mention of cancer, and these are supplied by all licensed pathology laboratories in the province; reports from the Princess Margaret Hospital and all of the foundation's regional cancer centres; and finally, reports of death certificate information for all Ontario residents dying in Ontario, and these are supplied by the registrar general's office.

All of these source files contain identifying information that includes patient name and date of birth for all of them and health insurance number for three of the four, as well as diagnostic information. A detailed listing of all the data elements on these four files is in appendix C. Again, the reporting of this patient-specific information is done on a voluntary basis.

The accuracy of our record linkage is heavily dependent on the completeness and accuracy of identifying information on the files that are supplied to us. Because of the dynamic nature of the registry -- that is, new records describing the same patient must be allowed to link to older records -- and because of the need to accurately identify subsequent cancers in the same patient, it is essential that personal identifiers, including name, date of birth and health insurance number, continue to be collected and retained. Without this provision, multiple counting of a single cancer would be a serious problem, grossly inflating estimates of cancer risk in Ontario. These identifiers are also necessary to ensure that data about individual patients in the registry are complete and accurate. Retention of these identifiers also ensures that good cancer survival statistics are produced and that patient-specific information is available for certain epidemiologic studies.

If the OCR were to fall directly under the provisions of the Freedom of Information and Protection of Privacy Act, it would appear that it would be operating in violation of this statute. Under subsection 38(2),

"No person shall collect personal information on behalf of an institution unless the collection is expressly authorized by statute, used for the purposes of law enforcement or necessary to the proper administration of lawfully authorized activity."

Further, under section 39, "Personal information shall only be collected by an institution directly from the individual to whom the information relates."

While the OCR does not yet fall under the Freedom of Information and Protection of Privacy Act, it would seem that at least two of its suppliers do, the Ministry of Health and the Ministry of Consumer and Commercial Relations. If access to the information provided by these suppliers is denied, then the usefulness of the OCR would become so limited that the operational cost probably would no longer be justified. The notion that explicit patient consent ought to be required as a prerequisite of cancer registration, while a noble idea, would be quite impractical. It is clear from the experience in Europe that such a requirement would produce an uncontrollable selection bias and an unacceptable distortion of cancer rates and frequencies. The effect would be so disastrous that the data would be largely uninterpretable and of little value.

Now I want to say a few words about the uses of the data in our database. Under the Cancer Act, information in the registry is to be kept confidential and not to be used or disclosed to any person for any purpose other than for compiling statistics or carrying out medical or epidemiologic research. Tremendous advances in health have been achieved over the past century as a direct result of epidemiologic research and environmental controls. With the application of epidemiology to the study of chronic diseases we have gained much useful knowledge about the role of occupation and lifestyle and the environment as causes of chronic disease. Most epidemiologic research depends on the collection and use of personal information.

In such studies it is often difficult to gain a fully informed consent from the subjects under study. For example, in many record linkage studies in which a historical roll of subjects who have had an exposure of many years in the past, such as may be defined from employment records, is matched to a current disease register we have the opportunity to study in an efficient but powerful way, the possible association between an exposure and an outcome. For many chronic diseases, particularly cancers, causal exposure may precede clinical detection by 20 or 30 years or more. Obtaining consent from all subjects is usually impossible for the researcher. Many subjects will have left the workplace and will be untraceable, while many others will often have died.

In another form of epidemiologic study known as case-control studies, where subjects who are known to have had the disease of interest are interviewed about previous exposures and compared to subjects not known to have the disease, a fully informed consent is often undesirable. That is, full release of all study details may cause a large reporting bias in such studies, not to mention undue anxiety and distress about potential causes that are later disproven.

In spite of many citizens wanting reassurance that their personal information is not being misused, it is hard to find examples of public disquiet related to use of personal information for epidemiologic research. We are not aware of any examples of such studies ever breaching patient confidentiality. We believe that most citizens, including cancer patients, are glad that health information that is routinely collected as part of patient care and administration is put to good, judicious use by epidemiologists. This information may be a source of help to many others, without causing undue harm or embarrassment to cancer patients. Over the years, we have received many unsolicited letters from cancer patients to this effect.

We believe that citizens should have control over the extent to which information about them is available to others. However, we believe this right is not an absolute one and that the risk of personal harm must be weighed against the benefits to public health and safety. There are many instances where the public interest is held to override the claims of the individual, including mandatory notification of infectious diseases and births and deaths. In order to protect good epidemiologic research, it may also be necessary to make the reporting of cancer mandatory in Ontario, as it is currently in some other Canadian provinces.

Now I want to say a few words about the steps we take to protect this data. The Cancer Act of Ontario, which I have placed in appendix D, legally enables the Ontario Cancer Foundation to collect information relating to cancer patients treated in Ontario. Under section 5, the object of the foundation, includes, "(f) the adequate reporting of cases and the recording and compilation of data;"

This section is not very precise. It certainly does not impose a mandatory requirement on anyone to report cases of cancer.

The Cancer Act also states, "Any information or report respecting a case...shall be kept confidential and shall not be used or disclosed to any person for any purpose other than for compiling statistics or carrying out medical or epidemiologic research."

All employees and researchers with access to identifying information must sign an oath of confidentiality.

The computerized database resides in a mainframe computer which is dedicated to the operation of the registry. This computer is located in a locked room with restricted access at the head office location of our foundation. It is equipped with a RACF security system with strict control over passwords. On-line access to this database is only permitted for staff who require access as a condition of their employment and who have signed a security briefing attestation. Off-site access is not permitted. All paper reports containing identifying patient information are stored either in locked cabinets or in a locked filing room, when not in use.

Policies and procedures exist concerning the processing of requests for access to cancer patient information. I have appended these policies and procedures in appendix G. Requests from researchers must be in writing and they must be sufficiently detailed to enable decisions to be made about the scientific merit of the proposed study and the necessity for identifying information, as well as the determination that safeguards will be adequate to ensure confidentiality. Requests for the release of identifying information for the purpose of patient contact must be reviewed and approved by a subcommittee which is responsible to the board of the foundation. Summary reports or papers describing cancer patient information that may be of an identifying nature, and this includes small frequencies in small areas, are not permitted. Where patient contact is necessary for proposed study, ethics review committee approval is also required, as well as written consent from all attending physicians.

In summary, both the procedures of registration and the optimal use of data in the OCR make it essential that individual cancer patients be identified. If registration in the OCR is to be accurate and complete, we will continue to need to collect data about individual patients from the four sources that currently report to us. It is essential that personal identifiers, including the patient's name, date of birth and health number, continue to be collected.

The Chair: Sorry to interrupt at this particular point. There is going to be a vote in the House. It is possibly a five-minute bell. I think we had an agreement earlier that we would go and vote and come back and continue these proceedings once the vote has been taken. So we will adjourn the committee hearings until after the vote and we will hold the clock.

The committee recessed at 1751.


The Chair: Sorry for the interruption, but you may again proceed.

Dr Holowaty: Let me finish with a summary of my presentation.

Both the procedures of registration and the optimal use of data in the registry make it essential that individual cancer patients be identified. If registration is to be accurate and complete, we will need to collect data about individual patients from the four sources that currently report to us.

The requirement that patients give explicit consent in order to be registered in the registry would cause uncontrollable selection and unacceptable loss and distortion of cancer data, negating most of the value of the registry. Adequate safeguards for protecting patient confidentiality can be met through appropriate security procedures that are currently in place. In order to protect the registry and its suppliers we believe it will be necessary to make the reporting of cancer legally mandatory in the province of Ontario.

We believe the data protection laws of Ontario should ensure reasonable but controlled access to health records and databases so as to facilitate good research, while at the same time safeguarding against unauthorized disclosure.

As custodians of cancer patient information in the registry, we have a duty to ensure that these records are made available for the purpose for which they were collected, and that is cancer research, but at the same time to protect them from improper use. We ask for your support to ensure that the Freedom of Information and Protection of Privacy Act, whether or not it is extended to cover additional agencies, including the Ontario Cancer Treatment and Research Foundation, will not prejudice the operation of the Ontario cancer registry. We ask you support to our recommendation that the reporting of cancer be made mandatory in Ontario.

On behalf of my colleagues, I want to thank the members of this committee for their attention. Before I turn it over to Dr Jenkin, I would like to ask if there are any questions relating to this issue of the Ontario cancer registry. Again, thank you for your attention.

Mr Frankford: I would love to have an extensive discussion, as I happen to be in a position not only as a physician and legislator but also a patient, so presumably I am registered there, but maybe I should be able to check.

Dr Holowaty: To tell you the truth, the database cannot be used to verify that information. We do not have the right to search it for that reason. It is conceivable that at some time in the future that information, if indeed that is true, may be used for research purposes, but we cannot use it for any other reason.

Dr Clarke: Under the present cancer legislation, it can only be used for medical and epidemiological research, so that on one occasion when I was director of the cancer registry I was asked to disclose a patient's information for the care of that particular patient and the Cancer Act legislation did not permit me to do so. So if you were to ask Dr Holowaty, in a letter of writing, if your name was in the cancer registry, he would have to tell you he would be unable to release that information to you. But if your name were on a hospital discharge, you have a pathology report or you were seen at either the Princess Margaret Hospital or at a cancer treatment centre, it is very probable that your record is in there without your voluntarily giving that information and having given informed consent that information be in the cancer registry.

Mr Frankford: I do not want to hold up people's time, because I could go on. Switching to my physician role, what if I wanted to do a small study on males of my age with my condition and look for some common factor?

Dr Holowaty: It would depend on the detail you would require for that study. If you required detail about individual patients that might include information of an identifying nature, even if you had no intention of contacting those patients, you would be required to submit a protocol that would be reviewed to determine not only that you take adequate precautions to safeguard patient information, but that there was sufficient scientific merit, as a condition to release of that information. We have received many questions that can be answered quite easily just through data aggregates that we routinely assemble. Much of that sort of information can be provided very quickly to patients or many others -- that you will see we describe in this brief -- who use the registry.

Mrs MacKinnon: I am sitting here with very mixed emotions, because I was absolutely unaware that this type of facility existed. So I am sitting here asking myself: "It exists; why? Obviously for research."

But I am also saying to myself -- there is cancer in my family, so I am a bit emotional -- "Do I want it spread all over the country that this cancer exists?"

Also I am wondering, is this the only one there is in Canada? If so, why?

Dr Holowaty: If I can answer, there is a cancer registry in every province and both territories of Canada. This is one of the few nations in the world where we have complete cancer registration in our country.

As I said in my presentation, there are no instances, that we have any knowledge of, of a single breach of patient confidentiality as a result of epidemiologic research. We believe that the researchers take this very seriously and exercise every possible precaution to safeguard this information. Yet it is not well known that these registries do exist and carry on research.

I did not describe the nature of the research. It is in my brief and you will see there are a number of projects. I describe half a dozen currently under way that are of direct benefit and very relevant to the citizens of Ontario, whether it is shedding light on the relationship between the child and leukaemia and nuclear reactors, or a relationship between electromagnetic radiation and cancer, or the effectiveness of cancer screening programs. There are a number of these studies under way. In all of these cases, there is no direct patient contact, but individual patient information is necessary for the purposes of accuracy of the study. Again, this is in my brief.

Mrs MacKinnon: You say there are these cancer registries all across Canada and in both territories. Are they -- the only word I can think of -- interconnected?

Dr Holowaty: They are. There are agreements to exchange information about cancer patients with other registries. For example, if Ontario residents living in northwestern Ontario near Kenora venture to Winnipeg, as many do for their cancer care, then that information will be supplied by the Manitoba Cancer Treatment and Research Foundation to our foundation, so that we will have accurate and complete information about all Ontario residents who have cancer. There is an effort, at the national level, to create a national database, so that all of this information may be brought together in a single database, but the effort has been under way for several years and will require careful agreements in order to build such a database. In the event that such a database is created, it will be the largest national database of its kind in the world.

There are over 200 such cancer registries in the world, but there is no nation, I believe, that has a registration as complete as Canada's.

Mrs MacKinnon: Just one last short question: Does the patient know about this before the name goes on the registry?

Dr Holowaty: That is an important question. I believe the majority of patients will not know about this.

Mrs MacKinnon: I thought so.

Dr Holowaty: This is probably because, as I described, we use files of information that are prepared for other purposes, and copies of these are transmitted to us in order to allow us to build a complete and accurate cancer registry. We are not out in the field to collect this information, it is transmitted to us. This is done for reasons of efficiency and increasing concern about the cost. Within health care, we know that this is a more efficient way to build a cancer registry. We would certainly have no objections to sharing the knowledge with cancer patients that such a registry does exist, though.

The Chair: Thank you. Did you want to make a comment?

Dr Clarke: Just as a supplementary, but I think my colleague can speak to it. It has been found that if you were to say to a cancer patient who has just being diagnosed with a disease that we have to realize means that one out of the patients diagnosed will die and therefore it is a dread disease to be told you have, "We would like you to sign this form to allow your information to be sent to the Ontario Cancer Registry," I do not think any patient is in a state to make an informed decision. They want to know, "What is the Ontario Cancer Registry? Is my name going to be broadcast to the world?" What has been found is that when that provision is introduced, which happened in Germany with the reunification of Germany, the East German cancer registry had to close, because in 50% of cases the physician does not wish to ask that question and the patient does not want to think about it at that point in time.

Mr Owens: Would non-physician groups wishing to carry out studies -- and I am referring specifically to unions, for instance, that are wanting to do health and safety research -- be able to access this registry, and how would they go about doing it?

Dr Holowaty: Many studies have been undertaken of the relationship between occupation and cancer in Ontario. Most of the involvement has been through the Ministry of Labour, though. That is often how trade unions deal with their concerns. Again, the same procedures apply. A protocol has to be submitted. There has to be scientific merit. Where a report is to be prepared to describe the findings, all care must be taken so that no information of an identifying nature is released. This is particularly problematic in small workplaces, where perhaps 100 or 200 employees may be working. Just the knowledge that one has a particular kind of cancer, without any obvious identifiers, may be enough to link who that person is in that workplace. So we recognize that concern. In an instance like that, we would not allow the release of such a report. There are ways to mask that information yet none the less make the point whether there is scientifically valid information that there is an increased risk in that workplace setting.

The Chair: Does anyone else want to make further comments?

Dr Holowaty: If not, perhaps I could introduce Dr Jenkin, who wants to present his concerns about the impact of the legislation on cancer patient care. Dr Jenkin is a radiation oncologist and specializes in the care of children with cancer. He is also the chief executive officer of the Toronto Bayview Regional Cancer Centre, which is one of the largest cancer centres in Ontario.


Dr Jenkin: I only wanted to speak very briefly on the impact of the Freedom of Information and Protection of Privacy Act on practising cancer physicians in the province. Before I do that, though, I have one comment in relation to the cancer registry. It is of extreme value to academic physicians who are evaluating the treatment of cancer and the outcome of cancer.

Just one example: In this last year, I was involved with a study at the Hospital for Sick Children of one particular childhood tumour where we knew that at that hospital two thirds could be cured, which is a result as good as any in the world and perhaps better than most. We were able to ask the question, what is the result in the rest of the province? We found that in the rest of the province substantially less than half of the children were being cured. That has led to another study to evaluate why that is the case. I think one could predict with reasonable certainty that when that is completed, recommendations will be made that will actually improve the outcome in the rest of the province by one mechanism or another. To a practising physician, the cancer registry provides valuable data that allows important studies to be done. Obtaining a cure in cancer is not only a question of getting new knowledge; it is a question of properly applying current knowledge.

Coming back to the more general question of the impact of the act on the practising cancer physician in the province and perhaps one could say more generally to physicians practising in the province, I think physicians in general are very supportive of an act of this type. Their concern is really only one, and that is that the act not directly or indirectly do anything that would be harmful to either the patient or the community at large. Clearly that is not the intent of the act, but it is always a difficult issue that freedom of information and protection of privacy are finely balanced. It is not easy to properly weigh those two extremes to get the appropriate interchange of information.

What I thought I would do was just describe one area where there is concern and two areas where there might be concern. As an area where there is concern, I would just describe one current process at Sunnybrook Hospital that has changed because of legal interpretation of the current act. That relates to what happens to the final note summarizing a patient's hospital admission. It is true of cancer patients and all the other patients in the hospital that in the past those notes were circulated to all the referring physicians automatically on discharge of a patient as an appropriate transfer of information between the physicians identified by the patient as caring for them.

In the last year, that has been changed. We are not allowed to send out those notes without having in our possession the signed consent of the patient. That may seem a good principle in one way, but in practice one finds that frequently that consent is not available and signed. In those circumstances, these notes are not allowed to go out by the hospital.

I have no doubt that in a majority of those cases it is a failure to get the form signed and not an indication of a patient's wish not to have the information sent out, so I think at the present time we are substantially risking some patients by not transferring appropriate information. In that regard, I think the act could be clarified in determining who has the initiative in saying yes or no to the transfer of information, that in this particular --

Mr Frankford: If I can interrupt and ask for clarification, is this a universal hospital policy now or is Sunnybrook special?

Dr Jenkin: I am sure every hospital has a somewhat different policy. Some will be doing that; some will not be doing that. I really have no information on what proportion are doing that at the moment.

Mr Frankford: But this is a consequence of the --

Dr Jenkin: It is a consequence of what is felt to be a change in this type of act. At the moment the onus is on the hospital to obtain consent. It seems to me that the same end could be achieved by notifying patients on admission and providing them with a form that allowed them to say, "No, I don't want this information to be sent out," but if they do not take that action the information will be sent out.

In that regard, we sent out from the cancer centre over the last 10 years more than a million pieces of information to physicians about patients. I have to say that in the last decade not a single complaint has been received from a patient on those million bits of data transfer with regard to some breach of privacy. I think it has generally been the experience in hospitals that patients very rarely feel there has been a breach of privacy in what has been the classical method of transferring information between physicians. That is one area where current practice has changed and I feel has changed to the disadvantage of the patient.

There are areas of potential concern. Cancer care is interdisciplinary. What that means is that several physicians are involved in making a treatment decision on a diagnosis with regard to a patient with cancer. They clearly can only make that decision if they have total access to the information on that patient. Clearly it is in the patient's interest and it is virtually always the patient's wish that the information be appropriately shared, but there is concern that patients may be required to sign something to say that information can be shared. If that were the case, it undoubtedly would impede the transfer of that information just as it is currently impeding the sending out of summary notes about a patient's care in hospital.

We have that type of concern. Then, when it comes to care in a cancer centre, and that is long-term care where we follow patients for many years, when patients first come to us they sign a consent form that says the data relating to their illness can be used for research purposes -- and that gives us authority to send it to the cancer registry, although patients very rarely ask what that means, "using it for research purposes" -- and on the other hand that we can send information to all their physicians.

With that consent, we assume that consent is of indefinite duration and we never again ask a patient for consent to do that. There again, that has never been any sort of problem for us. I would certainly hate to see any legislation that meant every X number of months we were required to obtain a new patient consent to say we could continue with that practice. I think it is fair to say that in health information, the classical methods of practice have in fact been very successful and have rarely led to problems.

The Chair: Did you wish to make a presentation?

Dr Clarke: No.

The Chair: This committee stands adjourned until Wednesday, October 30. Thank you for coming along here this afternoon. I am sorry you had to wait a little extra, but sometimes that is how it goes in these public hearings.

The committee adjourned at 1828.