Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology

Issue 12 - Evidence

The Standing Senate Committee on Social Affairs, Science and Technology met this day at 11:05 a.m. to examine the state of the health care system in Canada.

Senator Michael Kirby (Chairman) in the Chair.

[English]

The Chairman: Honourable senators, we are continuing our study on the state of the health care system in Canada. We have two panels this morning, and both will deal with the issue of health information. The first panel consists of Bill Pascal, Director General in the Office of Health and Information Highway in the federal government; Dr. John Millar, the Vice-President of Research and Analysis at the Canadian Institute for Health Information; and Dr. Robert Filler, the President of the Canadian Society of Telehealth.

Mr. William J. Pascal, Director General, Office of Health and Information Highway, Information, Analysis and Connectivity Branch, Health Canada: I will give you the highlights of a report that I will leave in both French and English versions for the committee members. I wanted to give you an overview of how we have been moving forward on the "infostructure" in Canada, what we see as the challenges and how we will address them over time.

We would like the right people to receive the right information at the right time, so they can provide the best care in the health system. There is much background to the work we are carrying out in this country.

We can go back to the Wilks report in 1991, which gave rise to the Canadian Institute for Health Information. The Information Highway Advisory Council report in 1995 provided further advice to governments on how to proceed. Part of the report of the National Forum on Health also spoke to health information and infostructure, and more recently, the Advisory Council on Health Infostructure reported back to Minister Rock in February, 1999.

In all those reports, there was a growing clarity as to how people felt we should be developing the health infostructure in this country. I would like to highlight specifically the vision that came out of the report of 1999, and on which all governments, federal, provincial and territorial, are working together in order to move forward. It stated that we are trying to empower individuals and communities to make informed choices about their own health, the health of others and the Canadian health system. An environment of strengthened privacy protection will build on federal-provincial-territorial infostructures to improve the quality and accessibility of integrated health care. This system will provide the information and services that are the foundation for accountability, continuous improvement to health care and better understanding of the determinants of health. That has been our baseline.

Underlying that is the belief that information and communication technology can make a positive contribution to the evolution of the health system and can support the patient-centred system to which everyone has been speaking. It can bring together the information that health practitioners, decision makers and researchers in this country need in order to make better health decisions or provide advice to individuals on how to respond to health situations.

In addition, it empowers individuals by providing them with more information so they can take greater control of their health.

Since that report, we have brought together the federal government, all provinces and all territories under what we call the "Advisory Committee on Health Infostructure." The CIOs of health from all those jurisdictions are participating, and we have begun to study how we can work together.

In our vision statement, you will have noted the comment that we have to build on what is already there. The health system in this country is actually 14 systems; 1 federal, 10 provincial and 3 territorial. They do work together, but in order to accomplish what we want to in this country and ensure that we move information in a timely manner to the right place, we must cooperate. We cannot do it alone. There is a high degree of cooperation around that table from all jurisdictions in trying to move forward.

We have also recognized that we cannot do it all at once. It is better to do some things right and then move on. Around that table, we have agreed on three areas for which it is important to devote time and energy over the next several years.

The first is starting work on building an electronic health record. That will be a 10-year process, but we must begin it and move forward.

The second area is building integrated provider solutions. By that we mean putting the tools in the hands of practitioners so that they can improve the way in which they provide care. This could be clinical practice guidelines or adverse drug reaction information. Practitioners will design tools to help them practise care the way that they want to.

The third area is moving better, more trustworthy information into the hands of the public. As you are probably well aware, the health system is very asymmetrical. In most cases, the information in the system is with providers. It is not a sector in which there is a balance of information, and therefore of power. In our view, it is important that the individual who has to interact with the health system has access to information and is in a better position to engage practitioners, or other people within the system, in a way that allows them to jointly manage the care - as opposed to how it was when my mother visited a doctor. She was told what to do and she did it. We want to change that interaction.

We have developed a tactical plan to guide our efforts on that front. Through the advisory committee, we are starting to put more time and effort into clarifying what is happening in that regard.

A number of things already happening in Canada are giving shape to the health infostructure we are trying to weave together. All provinces have made fairly major investments in health infostructure. Saskatchewan has built the Saskatchewan Health Information Network. Alberta has built the "we//net."

We are beginning to build infrastructure. The key element is how to bring those infrastructures together. I will talk about the challenges of integrating 14 jurisdictions.

Other things have happened. At the federal level, we have been trying to push the envelope of conventional thought on how embedding information and communication technology in the health system affects the provision of health care. Looking at the health sector as a marketplace, we are probably all children in the $life cycle" of understanding how information technology can facilitate the provision of care. As an example, it took the banking industry 20 years to get to where it is now in using information and communication technology to improve the provision of services. We are in the early phases of trying to understand that.

At the federal level, through our Health Infostructure Support Program and our Canadian Health Infostructure Partnership Program, we have been expanding upon some good ideas. We are evaluating them and sharing that information.

I believe that we do a wonderful job of creating data in the system, a mediocre job of turning it into information, a lousy job of turning it into knowledge, and an even worse job of sharing that knowledge. It is not because people do not want to do it. It is because people are so hard pressed by what they are doing that it is hard to step back and do broad-system thinking.

We are trying to find out what works, what does not, and what lessons have been learned. We want to share that with everyone, so that people doing a project in Saskatchewan can talk to a colleague in Nova Scotia about how to improve the system and not repeat mistakes.

When the first ministers met in September, the Prime Minister committed half a billion dollars to set up a corporation to accelerate the integration of information and communication technologies into the health system. That corporation has been set up and the money has been provided. We are in the process of finalizing the composition of the board to get the corporation running.

Its job is to take the advice coming from Health Infostructure, which is made up of the 14 jurisdictions, and invest in areas that we believe will start to build a pan-Canadian ability to manage information. I use those words carefully. The mandate is not to build a huge database. It is a widely distributed database, with appropriate privacy and confidentiality controls. It is useful to move information to practitioners in order that they can provide better care. If and when an individual consents to that, we would have the capability.

This applies to where people receive care. Ninety-five per cent of health care is provided within a two- or three-mile radius of people's homes. However, within that area there are five or six different types of practitioners, including primary care doctors, dentists, specialists, physiotherapists, laboratory technicians and pharmacists. There is no efficient way for those people to understand your health care needs. Are there adverse reactions? With your consent, prior lab test results could be shared when you go to a hospital. That is what we are trying to achieve.

I am now seeing a willingness to work together. I see conditions in the environment that will make our transition within the health sector, albeit challenging, much shorter than the 20 years that it took the banking industry. There are a number of reasons for that. First, the technology is much more sophisticated than it was then. Over the last five years, I have seen solutions to managing and securing information that I thought would be very difficult to achieve.

Second, there is a level of comfort with the e-environment in which we now work, with regard to health or otherwise, that did not exist five to ten years ago. For example, we are now all comfortable with using ATM machines to get our financial information.

As well, a level of cooperation exists across jurisdictions. We have all spent a lot of money on what I call the "bleeding edge." We have done many things that have not worked too well. We have realized that it makes better sense to invest jointly, share the risk and look for common solutions.

That is what we are now working on. We will make the most progress if a couple of things happen. First, we must come up with common standards for a number of the areas on which we want to work. The first is how to build information systems to capture drug and lab information. We are being told by the practitioner community that that would facilitate the care they provide. In addition, it would prevent many unnecessary lab tests and help avoid adverse drug reactions.

In order to do that, we must have the capability for a patient registry and a client registry, and we must have a secure platform. We must be able to ensure that if we do move information, even from a lab to the primary care doctor's office 20 yards down the street, that information is secure and is correct.

If we can get those standards in place, we will be able to start to move the markers. One of the big issues is that we have all gone at it individually, which means that we are building solutions that do not necessarily work together.

I believe where we are going now makes good sense.

From the point of view of stakeholders, I have talked about the provinces, territories and the federal government. The provider community must be heavily involved. At the end of the day, if the providers do not agree to use whatever we build, then we will have built something for the wrong reasons. Therefore, we are reaching out to the provider community to help shape how this will work and build the tools that they would like to see.

There also must be ease of use. The provider community must see some value in this. They have to see some return for actually working in a much more, if I can call it, "highly embedded" information technology health care system.

The other side of that is how to engage the citizens of this country in ensuring that we are taking seriously their concern for privacy and confidentiality. In the work we are trying to do at the federal-provincial-territorial level, we are attempting to ensure that we have dealt with the privacy, confidentiality and security aspects as we move forward on this.

In fact, it is written into the mandate of the corporation that the security, confidentiality and privacy issues have to be dealt with as a condition of any funding that it will be receiving.

Those are the things on which we are pushing forward. The general sense is that this is not a short-term journey. I think it will take about 10 years to build a pan-Canadian capacity to let us do the things that are being done in other sectors, and the things that not only the practitioner community, but also the citizens of this country see as useful and valuable. This is where we are going. It will result in better care and better access. It starts to integrate the pieces of the health care system that for many years have worked in silos. It also helps us drive out inefficiencies. There will not necessarily be cost efficiencies, but it will allow practitioners more time to provide better care to their patients.

The Chairman: It would be useful for the committee to understand the extent to which what you propose to do, of which we are in favour, will require changes to what was Bill C-6, the Personal Information Protection and Electronic Documents Act. As you know, the health care sector was allowed a year to get ready for that. We heard as recently as in testimony yesterday that the health care sector is still not ready. I want to come back to that issue. I would hate to see what you want to do get into trouble because of that.

Dr. John S. Millar, Vice-President, Research and Analysis, Canadian Institute for Health Information: Thank you very much, Senator Kirby, for the invitation to appear before you today on behalf of CIHI. I read with great interest the first volume of your reports and thought it was a great product. I am pleased to be part of this once again.

I intend this morning is to go through for you what the current situation is from our perspective with respect to health information in Canada, giving you a little update on our report that came out yesterday. I believe you have all received copies of that.

My apologies to you for not having the presentation and handouts translated into French, but we simply did not have time.

This report is a direct consequence of the so-called "Roadmap Initiative" that received $95 million from the federal government two and a half years ago, and is the second product of that. It is important to recognize that the continuing ability to do this is dependent on ongoing support of that nature.

I remind you that CIHI is governed by an independent board composed of some federal deputy ministers, provincial deputy ministers of health, a number of academics and others. The funding for CIHI comes jointly from the federal government and the provinces. We have bilateral data-sharing agreements with all the provinces.

Our vision for the health information system is simply to provide better information across the country to improve health. The purpose is to get into the hands of public providers, managers and policy-makers the data and information they need to answer two big questions: How healthy are Canadians, and how healthy is the health care system?

The results of that process are improved accountability, a better quality health care system and, ultimately, improved health and reduced inequities across the country.

I showed you this graphic when I appeared before you previously. It captures the notion that the data and health information we are talking about are certainly not limited to the health care system. The bottom two tiers you see there are directly related to the health care system, but the top two are related to the health status of the population, and the distribution of and inequities in health status as measured by mortality, wellness and so forth.

The second tier is intended to capture data on the various non-medical determinants of health, such as poverty, income, jobs, housing, early childhood care, the environment and risk behaviours, amongst many others.

This is just to firmly plant in your minds that the health information system as we conceive of it is much broader than the health care system itself.

I would like to focus on the issue of quality in health care, which I presume is your more immediate concern. The Institute of Medicine in the United States has produced a document, of which I am sure you are aware, called Crossing the Quality Chasm. It identifies three major categories of quality issues: the overuse of services, such as the overuse of antibiotics and the inappropriate use of major surgery; the misuse in the system, such as health system error, nosocomial infection, and adverse effects of medication, of which I will give you some more details shortly; and the underuse of effective services, such as childhood and adult immunizations, preventive cancer screening and many others.

Just to turn briefly to the topic of system error, and I am sure you have already heard about this, these are estimates produced by Barbara Starfield and printed in an editorial in the Journal of the American Medical Association some months ago. Approximately 100,000 deaths per year in the United States are related to system error. This includes surgical errors, anesthetic errors, errors in medication, a variety of errors. Ms Starfield has made the point that if you add to that figure deaths from infections acquired in hospitals and non-error medication deaths, it doubles to 200,000. Then if you go outside the hospital into the community, you can add another 200,000 medication-related deaths. They are not all errors and not all preventable, but the point is that the health care system emerges as a major cause of death in the United States.

If you add other things like nosocomial infections arising in nursing homes and other sites, this category becomes a leading cause of death, the equivalent of four to five 747s crashing daily in the U.S.

The Chairman:The data are certainly very reassuring.

Dr. Millar: You would rather fly than go to the hospital. There are very little data in Canada, certainly no systemically available data, but by extrapolation, there is no reason to think the system here is any better. That would translate, using the usual 10 to 1 ratio, into 50,000 deaths per year from error, infection and medication-related problems, equivalent to the leading causes of death in Canada, heart disease and cancer. That does not even begin to capture the increased morbidity, the increased length of stay and the increased costs that go with this. In Canada, that translates into one 747 crashing every second day.

The only bright spot at the moment is that with Roadmap funding, and in partnership with the Canadian Institute for Health Research, we are embarking on research in the Canadian context, to try to at least scope out the magnitude of error within the hospital system. We hope that when that research is in, in a year and a half, we will be able to present you with some much more solid information on that issue.

Part of that research endeavour is to scope out specific indicators that we can extract from administrative databases to track progress that has been made in Canada.

I would like to briefly hit some of the highlights of the report in front of you. You will have time to go through it in more detail. Health care expenditures, both public and private, continue to rise. We are approaching $96 billion per year. Despite that, and I made this point to you last year, public sector per capita spending in other countries is actually moving ahead of Canada. We are somewhere in the eighth or tenth ranking amongst the OECD countries in terms of how much public money we spend per capita in this country. The United States spends considerably more than we do, despite the fact that they have a privatized, so-called "competitive" managed system.

There are some interesting things to pay attention to there. Hospital beds continue to close. There are data in the report showing that, to some degree, those hospital bed closures are being compensated for by more day surgery and services in the community. As Minister Rock said at the press conference, that does not mean that some of the burden for this care is not being shifted onto individuals and families. We do not have data on that. It would be interesting to obtain more data on it.

We continue to see quite high levels of satisfaction among people who have directly experienced health care. The range is 80 to 90 per cent. Depending on which surveys you look at, there is, by and large, very good satisfaction among people who are personally experiencing the health care system.

On the other hand, the percentage of those who gain their impressions more generally and are satisfied with the system has dropped over the 10-year period to 60 to 70 per cent. That has either stabilized or gone up a little in the last year.

Part of this business of closing beds and intensifying the level of care in hospitals is being reflected on both physicians and nurses. Of course, the nursing numbers per capita have dropped. That is being reflected in time off work for stress and so forth. You will see such data in the report.

We do not have comparable data from across the country on the very prominent issue of wait times. We can point to some jurisdictions, such as Alberta, where they are trying to get some standardized and comparable data in place. This also holds for Ontario and B.C. to some degree, where there are mixed results. Some of the waiting times are going down while others are going up. We cannot make a true comparison, but we are working on that.

We present some interesting outcome data here. For the first time, we have been able to show the likelihood of surviving when you are admitted to hospital for an acute myocardial infarction, for example. We show that there is roughly a twofold difference across the country, depending on where you are admitted, in how likely you are to survive for a month after a heart attack.

Life expectancy continues to go up. Infant mortality rates continue to drop. Overall mortality rates continue to improve. There has been yet another study showing that despite hospital closures and the predictions of doom and gloom and people dying in the streets, by and large that has not happened, and mortality rates have continued to improve in specific groups that have been examined.

On the broader population front, there is the very disturbing finding from the Canadian Population Health Initiative that we are facing an epidemic of obesity in our young people. In the past decade, obesity in the 7- to 13-year age group has roughly doubled. That has huge implications downstream for diabetes, hypertension, heart disease, renal disease, transplant programs, hospital care, physician care, drugs, et cetera. We know that young people who are obese tend to be obese as adults. If we get a doubling of the rate in adults, we will have major problems.

As I said to you last year, there is far more that we do not know than we do know. We are beginnings to drill down a little, scratching the surface a little more deeply. Where we have outcome data in the report, it is still clearly in the hospital sector. We have not been able to move into home care, pharmaceuticals, primary care and mental health. All those issues remain without data. There are projects underway on all of those. Thus, in the fullness of time, there will be data. As I said, we will address errors. We will also be addressing costs and value for money.

That is a very quick run-through of some of those things. I was asked to address the current investments in the health information system. This is a very rough estimate, but approximately $1 billion to $2 billion is the amount across the country, or 1 to 2 per cent of total health care expenditures if we take $96 billion as being the total.

As Mr. Pascal mentioned, the banks have long been in this business, as have insurance companies, the airlines and package delivery systems. They all spend anywhere up to 10 to 12 per cent of their total operating budgets on collecting, managing and analyzing data. Thus, there is quite a gap there. Where should we be? I think I have heard Mr. Pascal say that we should be at 5 or 6 per cent.

Mr. Pascal: Banks invest approximately 7 per cent of ongoing operating costs, while insurance companies invest about 12 per cent. The health sector is no less information intensive than those industries. We have a unique dimension. We are a "high touch" industry, meaning there is a very high human interaction dimension which complicates how one tries to manage information. At a minimum, you need probably around 7 to 8 per cent. This means you need at least a threefold or fourfold increase in what I call "information communication technology investment" in the provision of care in this country.

Dr. Millar: As we look ahead to trying to develop better information, clearly the need to capture some of this quality aspect is there. We have inadequate data, both in terms of content, as I have outlined to you, and in terms of timeliness. Many of the data in this report, for example, for life expectancy, are from 1997. They are four years old. We have to do better in terms of some of the basic data on hospital performance, health status, et cetera.There is a lot to be done there, which will require more investment. We have far more information on airlines, cars, VCRs and professional athletes than we do on our own health care system.

There is a question of system resistance. Hospitals, agencies and providers have long been used to working, as the Institute of Medicine reports describe it, as a "cottage industry," looking after themselves and their own quality processes but not wanting to share that publicly. There has to be an increased stress on accountability and informing consumers who, as Mr. Pascal said, are largely uninformed.

Mr. Pascal has already touched on the privacy issues. I want to emphasize that from our perspective, it is extraordinarily important to achieve a balance here between privacy and ensuring that the data flows continue, so that we can move ahead in getting good performance data on the system.

CIHI has had a long record of secure and confidential management of health information that is personally identified. We need that in order to make these linkages and produce these data. At the moment, we are working effectively within a framework of provincial legislation and bilateral data-sharing agreements. These are in the process of being strengthened and harmonized across the country. We are anxious to continue within that context because it works extremely well for us. We are able to ensure total privacy of the data, and at the same time, due to the necessary linkages and so forth, to produce the kind of data that are in that report in front of you.

It will be absolutely critical for the ongoing performance monitoring and accountability process. These arrangements are not impeded or impaired in any way by pending federal legislation. We are seeing that research access to our databases is already being impaired by the need to think ahead here.

I will make the point that when Minister Manley introduced what was then Bill C-6, he specifically identified CIHI as not intended for inclusion in the provisions of the bill. It will be very important to preserve that integrity of data flow.

The Chairman: It would have been helpful if, instead of saying it orally, it had been in the bill. That is an underlying and real problem. However, we will come back to it.

Dr. Millar: In terms of solutions to some of these problems, there is no question there will be increased need for investment. Mr. Pascal has touched on the electronic medical record that will be extremely important. We need to move in health from being a cottage industry to a continuous quality improvement culture.

I will stop there, Mr. Chairman. I was asked to address the role of stakeholders, but I am running over my time. We can come back to those if you wish.

Dr. Robert Filler, President, Canadian Society of TeleHealth: Honourable senators, thank you for inviting me to speak to your committee today. I would like everyone to look at a handout that I have circulated. Much of what I will say will benefit from this visual representation.

I should like to describe this business of telehealth. You have heard from the 30,000-foot level, and you have heard some other information. I am approaching the subject from what you might describe as the bottom end, or the street level. I will talk about how new technology advances are starting to change health care delivery, and have the great potential to make some order out of the chaos that exists in our delivery system.

When I mention the word "telehealth" to my friends, they ask what it is all about. For that reason, I thought I had better define the term so you understand it completely, because people use this word in various ways.

There are five basic components of telehealth. The first one used to be called telemedicine, which is providing consultations at a distance using video conferencing. The video conferencing is live and interactive, and uses a relatively high bandwidth, for those of you familiar with the technology. It is like watching CNN interview someone live. By utilizing this equipment, and devices at the far end, we can provide care to people at great distances. One understands in an instant the geographic limitations of care in Canada and how powerful such a system can be.

We also use video conferencing for education and training. Considerable education and training are necessary, particularly in remote communities, when one is looking at more and more complicated problems in care, and that is another important aspect of telehealth.

The health information part is a service to the public. I believe Mr. Pascal touched on that in his presentation. That is the kind of health information that consumers would access through the Internet, with which many of you are familiar.

Then there is the electronic health record, which is the information transfer of laboratory data and health records. There is another major area of care that we have called monitoring, telecare and triage. I will describe a couple of these in more detail as I go along. Many of these stand as individual components.

At the end of my presentation, I hope you will appreciate how all of these things must act together to create the seamless technology system that will come about over the next years in this 21st century.

There are a significant number of telehealth applications in Canada today. There is tele-consultation and tele-education. For example, there is much work being done in Nova Scotia because of their shortage of radiologists. X-rays are transmitted from places where there are no radiologists, to centres where these films can be read. Tele-psychiatry is booming. For the most part, patients say they would rather see the psychiatrist on a television than sit in the office live. They have a greater sense of privacy when that occurs.

The Ministry of Health in Ontario has referred to tele-triage as "telehealth," and that is the provision of nurse call centres. New Brunswick was the leader in this area, and in Ontario there are now 24-hour nurse call centres for people to phone for medical information. Then they can be triaged to wherever they need to go, or stay home. This has been a big help in decreasing the numbers of people who report for emergency room care.

There is also the issue of tele-homecare, which provides care using video conferencing in people's homes. Data is received from the home, thereby removing the need to attend at the hospitals. All of this keeps people closer to their homes and communities and away from the big centres, something that is a goal of everyone in the health care business.

The next item I wish to point to is the electronic health record. Many people are working on this. This is the piece that ties all these other pieces together, because when a physician sees a patient, the health record must to be sitting right there. It cannot be some amorphous mess hidden in the corner. The patient's record must be part and parcel of all these other applications of daily health care. It cannot be the 28 million different systems that we have today. We need some systems that talk to one another, so that patients can receive care wherever they are, with the appropriate information available.

I wish to draw your attention to a slide that shows the Hospital for Sick Children telehealth links from May 2000. There are links from major cities to various communities around the country. This service is available wherever there are high-speed phone lines, not just to the Hospital for Sick Children where I work, but to many other communities as well. We are looking at a great expansion in this area.

I would like to refer next to live, interactive tele-consultation. In one instance, a little girl was sitting in Thunder Bay and I was talking with her and her mother from Toronto. Here is her X-ray. In this situation, the effect is as if you are seeing a patient live, with all the data about that patient that you need. The only thing you cannot do with this technology is touch, but there are so many other things that have replaced touch. We have MRIs, CT scans and ultrasounds that are more accurate than touch. Many times, touch is not completely necessary.

You get a good feel for this extra dimension of seeing people and speaking with them directly, rather than just through telephones or having someone courier X-rays. It makes a big difference. Questions can be asked back and forth between the physician and the patient.

We have looked at the cost savings. I have a document that talks about that. The interesting thing is, it probably does not save the ministries of health much money. We have not done a good cost analysis to date. It does save on northern travel grants. If you look at the cost of transporting a child and the family from Thunder Bay, the average cost savings per family was $1,300. That was from the Thunder Bay region to Toronto. That is a fairly significant issue for families.

The next picture shows a child, one of whose hands does not look quite normal. I bring that up because it is a good example of how this works. This is a boy whose hand was severed in a farm accident and reattached in Toronto. He needed long-term physiotherapy. That special physiotherapy was not available in that community. By using teleconferencing, our physiotherapists were able to instruct local physiotherapists, and then we provided follow-up. This allows the boy to leave our hospital and return to his home, which is 500 miles away.

The next part, which is particularly exciting, is the kind of home care that is coming into being. In one of our own projects, we have set up a monitoring station within our hospital. Instead of the system being hospital-based, we wanted a home and a community care provider.

We have the community care access centre nurses linked in with the hospital nurses, the hospital physicians and the family physicians.

On the next page you can get an idea of what this looks like. A little television screen and a camera sitting on top are in the home. That camera will also transmit data. We can get blood pressure information from people who are sick. We can tell how much oxygen is in their blood. We can do all of those things and transmit that data, as well as the living image, to a call centre, which you will see on the next page, where the nurse is sitting and seeing the child at home.

The efficiencies of all of this must be worked out. Certainly it is clear that one nurse could see many more people in their homes if we cut out what has been called "windshield time." That is, if nurses were not in the car six hours a day. They could be seeing people six hours a day. Therefore, there are a lot of efficiencies in this system that could be worked on.

I want to say something about health care delivery today, and what all this could mean for the future. On the next page is something I cut out from the Ontario Medical Review. It is called the "Current Chaos of Care." To me it is impressive, and it says it all. That is what health care is in Canada today. Everything is disconnected. Anyone who has been ill or required services realizes that you have to deal with more than one person. God only knows what could happen to you. That is the situation today.

There is another example of the present system on the next page. Those "Ps" in the circles represent one person, the same patient. That is the patient. One or two hospitals could see that patient. They could be cared for by a social worker, family doctor, specialist and other people, including midwives and community care access nurses. You name it. They are all individual encounters. They do not link together.

On the next page, entitled "Priorities for Action in Canadian Health Care," is a summary of the results of the first ministers' conference last fall. You will see the things that I think we all would love to see happen - better access to care, bringing care closer to communities and home, expanded home care and community care, primary care reform, education and training to recruit and retain people in remote places, enhanced information communications technologies which will integrate all of these services at all points of care, and health promotion and wellness.

If you recall the first slide that I showed about telehealth, I think that you will appreciate that the technology to make all of those things possible is available, if it is integrated properly and every system talks to every other system.

There have recently been some important federal and provin cial announcements. I thought that I would list them. CHIPP grants worth $80 million were recently awarded. A new corpor ation, the Canada Health Infoway, has been established with $500 million, and will hopefully enhance what is going on now. Members of this committee are perhaps aware of the National Broadband Task Force. That is an Industry Canada initiative to extend broadband throughout the country by 2004.

That is very important for telehealth because we need the big broadband to see live images. If we want to see an echocardiogram from a child in Nunavut, we need broadband. It is necessary to direct the local person on what to do and how to get the right picture.

There is an expense to this, but there is agreement that the national broadband need not only be for health needs. There are educational and other social functions that could occur through this broadband.

The future of this technology is to connect our hospitals and communities. We could dispense with that chaos in health care.

On the next-to-last page, I have shown the convergence of the telehealth applications and the technology. The last page depicts a patient in the centre, with community services, hospital providers and family physicians all linked together electronically.

The Chairman: Thank you, Dr. Filler, for that fascinating overview. I loved your three diagrams of the 19th, 20th and 21st century delivery systems.

Senator LeBreton: There are many questions that we could ask. I believe that you, Mr. Pascal, talked about health information and the areas on which you were focusing - electronic health records, integrated provider solutions and putting information in the hands of the public. I have a specific question on privacy, and perhaps Dr. Millar may want to address it too.

Past witnesses have testified about rapid advances in the area of genetic testing, with the result that it is possible to identify people who are genetically susceptible to certain conditions such as cancer, diabetes, or heart disease. Dr. Bernstein from the Canadian Institute of Health Research called it "genetic inheritance."

Given the availability of this information, and the possibilities for both positive and negative use, how will we keep it going in the right direction and not end up with some form of genetic discrimination? For example, if a company is considering hiring an individual, but they find out that that individual carries a risk of developing a certain condition, would they perhaps decide not to? If this information got into the hands of insurance companies, would they refuse to insure the individual, or require him or her to pay a higher rate?

What is being done, either in Health Canada or in the Institute for Health Information, to deal with this issue? I think, Dr. Millar, that you listed privacy issues on your illustration of concerns and problems.

Dr. Millar: We must recognize that the public is greatly concerned about exactly the question that you have raised.

On the other hand, people do want to know, when they go into hospital, if they will survive a heart attack or not. People do want to know how their community is doing in terms of cancer care compared with the neighbouring community or the neighbouring province. All of that needs to be balanced.

In order to reassure the public, we must make sure that there are good privacy, confidentiality and security provisions in place. That is currently being achieved to a large degree with existing legislation, but it needs to be enhanced.

Wherever we can, we should make sure that organizations like ours are handling that private information appropriately. We should ensure that organizations are operating under legally sanctioned provisions, with adequate means to ensure that the data do not leave one set of hands and end up in the hands of an insurance company, employer, or anybody else. We absolutely must not share those data. Whatever legislation is brought in must contain those provisions. However, at the same time, it must allow for the data to be used for purposes that are in the public interest.

Mr. Pascal: The current system, with paper all over the place, is more susceptible to abuse than if the information were in electronic form.

It comes down to how do we as governments want to respond to the public's concerns about privacy and confidentiality? We are talking about moving more information into the electronic environment in many sectors in this country.

It raises the entire issue of privacy and confidentiality. From my point of view, that is a positive, because it has forced all of us, irrespective of where we are in the system or whether we are companies or institutions, to rethink our relationships with the people who work for us or with the people we serve. It has created an interesting and dynamic discussion across the country.

Where is that balance? All of us want to have our privacy and confidentiality respected. We also want to enjoy the benefits of receiving good care. We also want to enjoy the benefits of ensuring that government, or the health system in this particular case, is taking the appropriate precautions, such that if we see trends in disease patterns, we will be in a position to respond quickly. We do not want to wait until we see the consequences of those trends - increasing deaths, or increasing numbers of people being put into perilous situations.

I approach this as a positive, and we are beginning to work through it. Alberta, Manitoba and Saskatchewan already have legislation, although only Manitoba has enacted theirs. Ontario has been going through its trial and tribulations to bring forward legislation, and I understand that it will be reintroduced. You will find that all jurisdictions are considering what should be put in place to ensure that they are responding to the desires of the public.

We have to do a better job of measuring the public's opinion as to what is reasonable. Where is that balance? What is the type of balance? From a purely technological point of view, there are solutions that will do far more to protect your information than currently exist for the paper form.

Second, it can give you the ability to know who has seen your information, and it can give you a means of redress if you believe someone has had inappropriate access to it. You should have a right to that redress, and right now you do not. If you want to collect your health record, you have you to go to about six or seven different places. In some cases, it costs you money to obtain that record, and you are not sure who has seen it. There is a real upside to this, but governments and institutions must be diligent.

Not only governments, but also health institutions need their own internal protocols to guide employees in how to allow access to and use of information. I have visited a number of institutions that have what I consider to be very strong internal protocols, to the point that if you see someone's information that you should not have, you are fired.

That is the point that we must reach. We need to be serious and strict about this issue, but we must try to strike a balance. The discussion that is taking place now is a good thing.

The Chairman: If I sound frustrated, it is because I am. When the application of Bill C-6 - the personal privacy bill - to the health care sector was delayed by this committee for one more year, it was in the hope, and indeed in the expectation, that the health care sector would recognize that it had 24 months to deal with the problem. If Bill C-6 in its current form is to apply to the health care sector, there will be considerable problems. That is what brought us to this delay in the first place. We had one person say yesterday, and we have Dr. Millar continuing to say today, that it is critical that the problem be solved. My sense is that in the 16 months since this 24-month delay began, the health care sector has not addressed the problems. They now realize that they are coming up against the deadline and are wringing their hands.

Surely someone is responsible - and I presume it is someone in Health Canada - for finding a way to deal with the problem. Who is responsible? I would love to have him or her as a witness before our committee. Will we, in fact, resolve this by December 31, or will we have a problem in January that we tried to avoid?

Mr. Pascal: I am an optimist. I come at it as a challenge for the health system. Given the federated nature of our health care system and the way it is constructed, and depending on what part of the jurisdiction you are in, some things are considered commercial and some things are not; and some labs have all the problems in their systems and some do not. It is a mixed bag.

We have been working with those in the health sector to determine what is required from a privacy and confidentiality point of view, such that we can continue to respect the legislation that is in place. As we know, under Bill C-6, if there is substantially similar legislation in provincial or territorial jurisdictions, then that would take precedence.

Bill C-6 began a process whereby the health sector is taking a hard look at privacy and confidentiality, and how to try to manage that.

We have been doing a couple of things to find out "where people are coming from," if I can call it that, and where we think we need to do some more clarification work. We brought together six groups at the national level to work through our responses to it. There was the Canadian Medical Association, the Canadian Pharmaceutical Association, the Canadian Nursing Association, the Consumer Association of Canada, the Canadian Health Care Association and the Canadian Dental Association.

The Chairman: That is interesting. The people who are most affected by Bill C-6 are the various research organizations, and they were not included in your group of six. Nor were some of the industrial groups. It sounds to me like you went to the old tried and true constituents, and forgot about the two groups that are most directly and immediately affected by it.

Mr. Pascal: I try to take chewable chunks. If everyone who had something to do with this bill gathered together, there would be a great discussion. I am not sure that there would be an end point. I am trying to move the markers to achieve some clarity with that group.

CIHR has done work on a parallel basis in conjunction with health researchers. They have gone as far as constructing a guide that includes questions and answers to help the research community. That was developed with input from the Privacy Commissioner's office. It is not that nothing has been done.

In the discussion with those six groups, there were still some differences on where the balance should be. This is not easily defined. It derives from the interpretation of the act, at one end or the other, and somewhere there is a continuum. There is a need to be mindful and respectful of the public's needs, so that they can experience the benefits of shared information while being ensured a degree of privacy and confidentiality. I do not know where that balance is. However, I do know that the best way to begin is to bring people around a table and have the discussion. Then we can find out if there is an area of consensus, and some way to work this out. It is a tough issue.

The Chairman: No one disputes that. However, what will you do on December 31? I am a pragmatist. In the end, someone has to make the call. The one consequence of power is that you have the right to make a decision. No decision will make everyone happy, so you have to concede up front that some people will be angry with the federal government. The worst outcome is the enactment of Bill C-6. This train is headed that way, unless someone takes responsibility. We need a better solution than the one we have now. Reaching consensus with everyone is an impossibility. Therefore, why does not someone just take the bull by the horns and make a decision?

Mr. Pascal: We are beginning a second process. We have already had discussions with the Privacy Commissioner's office about producing what we call an "interpretation guide" for the business sector. We are now working with that office to prepare a similar guide for the health care sector. The guide contains some interpretation of how Bill C-6 applies to that sector. We are providing as much clarification as we can to the health care sector, so that they know how to respond and are prepared to do so. It will also assist them in dealing with privacy and confidentiality issues within their own areas.

We have started that process and we are hoping to come up with a draft over the next three months.

You are right, senator. Some people will like us and some will not, but we have to provide some clarity. It is better to provide that clarity so people know what to expect, and then they can respond.

We are starting to make larger investments in information communication technology in the health system. I want to ensure that the types of solutions we are looking at correspond to the level of confidentiality and privacy that we want. We want to give this guidance, so that when we start to make those investments, we are building into those systems the capacity, capability and flexibility to help the health system manage that. It is a tool for their aid.

The Chairman: Do you believe the issue will be resolved by December 31? If not, you have a problem.

Dr. Millar: We potentially have a problem. I am very pleased to hear that you folks are addressing it. You have the levers to make this move along. Our concern is that it is not being solved.

The Chairman: We are in the same camp.

Senator Morin: Do you have any specific solutions? Everyone realizes the problem, but no one comes up with solutions. It is not up to us to say what the solutions are.

Dr. Millar: We have looked at it with our own lawyers, but we are not legislative draftspersons.

Senator Morin: Do you have a position?

Dr. Millar: Yes. The original idea was that CIHI was not meant to be covered as a commercial enterprise. We are anxious that whatever is done to solve this ensures that we are not included as a commercial operation. Even though only a small proportion of our data may be shared on a cost-recovery basis, for one-tenth of 1 per cent of our operation, we do not want to be identified as commercial and therefore subject to possible legislative implications.

Senator Morin: At present, you have interrupted certain research projects because of the law.

Dr. Millar: That is correct.

Senator Morin: If the law is not changed, more research projects will be interrupted.

Dr. Millar: Unless the clarity is provided, that is right.

The Chairman: That is nuts. We have to solve the problem.

Senator Fairbairn: Thank you all. These have been fascinat ing and very encouraging contributions this morning. Those of us who have been involved, through our own families, with the disconnections in the system find it very encouraging to read of the progress and the thinking that is now taking place across the country.

Mr. Pascal called it the pan-Canadian ability to manage information and said that we now live in an e-environment, which makes a lot of this much easier to deal with in the context of the geography of Canada.

What you say is true. The generation now coming up, and even children, are very much plugged in. However, there are a couple of gaps that are of great concern and I want to hear your comments. One gap is our seniors, who deal with the need for the health system in their daily lives. Some of them are getting into computer activity, but many are not and will not. They are outside of what you are talking about today, but it is terribly important that they be connected.

The other is a skills gap. Over 40 per cent of the adult citizens in this country have varying degrees of difficulty with reading, writing and communicating in any of the languages that we are talking about here today. They are outside the perimeters of the very forward-looking, hopeful and optimistic processes on which you are working.

As you proceed with the technological linkages in the marvellous way that you are, we must have regard for that part of our population that needs linkages of a much different nature. I am hoping that at every level of the medical profession, those people within those gap areas will not be forgotten, because they are the ones most at risk when they cannot plug in and there is nowhere to go.

Dr. Filler: The technology that I talked about is very simple and very user-friendly. It does not require a patient to use a computer or even video conferencing equipment. It can be as simple as pressing a button in the home to connect to a call station. It does not require much in terms of skills from people who have never seen a computer. If they have seen a television, they will be okay. If there are any such problems, I am not aware of them. There are many home programs that involve seniors. They love it because they have this easily accessible connectivity that they never had before.

We do have a problem with people who may not understand the language. We have all sorts of language problems in Toronto and we are trying to deal with that. It is much easier to deal with that with a telecommunications system using a few inter preters - which is all there are, by the way - for a large population base. In fact, those kinds of things are now available. AT&T provides health care translators. If that is the kind of thing you are talking about, I think that will only be improved by the technology, not made worse.

Senator Fairbairn: I was not thinking particularly in terms of language difficulties. The people I am concerned about have limitations in their literacy skills. I was not speaking of the wider immigrant population.

Dr. Filler: I think that most of what I am talking about would work. In fact we have used it in very remote communities. I do not see that as a roadblock.

Mr. Pascal: We have started evaluating a number of the telehealth projects. We have tried to reach out to people in isolated rural areas who, in many cases, have not been exposed to the e-environment or to devices that we might see more readily in a large urban centre. The tools are fairly simple. We have not run into a lot of resistance. In fact, usually when I send someone into a home to work with a person, they like it better.

Second, from a technological point of view, we are now coming up with solutions that will make interaction in an e-world as comfortable as picking up a phone. No one thinks about the technology behind a phone. You pick it up, you dial, and it works.

We are getting to that point now with some of the solutions in other sectors. I see them migrating into the health sector. The tools will be simple.

Let me give you an analogy. In about 10 years, you will have a communication device in your home. It will not be a television. It will be a flat screen TV, probably a plasma screen, on your wall. It will be voice-activated. You will talk to it. You will say, "Connect me to my doctor." It will dial automatically for you. You will have a discussion. You will have a slot to put your finger in; it will do a blood test and take your pulse.

This technology exists now. This is not dreaming.

The Chairman: This is not science fiction.

Mr. Pascal: This all exists now. They are making sure it comes together. We will have an environment that will make it easier for the public, and for groups that we view as high risk, due to literacy issues or the difficulty of getting to them, to interact with the health system. I have seen tests of all this. It exists now. Unit costs have to be driven down and the technology has to become more ubiquitous. However, it is coming.

We are getting to a point where we will be able to help people from a health point of view in ways that we have dreamt about.

Senator Graham: This has been very interesting. When you say, Mr. Pascal, the technology exists now, where does it exist?

Mr. Pascal: Things like plasma screens exist now. Voice-activation software exists now. It has to improve. Voice activation in French is not very good. It does not work well if you have a heavy accent due to ethnicity. However, every year the technology improves. It has to become more sophisticated and achieve a higher accuracy rate before we are going to have doctors like Dr. Filler or Dr. Millar provide care through such means.

It is already being used in a number of the high-tech and manufacturing industries. Many software and hardware com panies are trying to apply their products to the health world. They see that information management is important in the health sector, perhaps more so than in many others.

We have to prove it. We have to show a value proposition to providers and other people, demonstrating that this technology works and is accurate. They must become comfortable with it before they will take it on.

I think we are in about a five-year cycle before we will start to see more of this technology being embedded in the way we provide care.

Senator Graham: Dr. Filler, when you were talking about telehealth, tele-consultations, tele-radiology and video conferencing, you made reference specifically to Nova Scotia. I believe that program was inaugurated about three years ago.

Dr. Filler: I believe a little more, probably four or five.

Senator Graham: At any rate, I was present at the launching as the then regional minister for Nova Scotia. I do not know whether I cut a ribbon or pressed a button or what, but I was fascinated.

Senator Morin: He has cut so many ribbons, he cannot remember.

Senator Graham: I was fascinated by the possibilities, and the realization that people in smaller communities, such as Pictou County, Bridgewater, the Annapolis Valley or Sydney, were able to teleconference with Halifax, where the specialists were located. If someone were involved in an accident, an X-ray could be taken and sent to Halifax. They were able to avoid transferring the patient to Halifax. How successful has that program been, and in what other provinces is this service available?

Dr. Filler: It is available in Newfoundland. It is partially available in Alberta. Ontario does not have a system just for radiology. I have seen the numbers for Nova Scotia, of 10,000 to 20,000 X-ray examinations per year now. That is probably the biggest growth in their telehealth business.

Nova Scotia is also linked to the other maritime provinces. There is a union with the other provinces to do that as well.

It works exceptionally well because the transmitted image is exactly the same quality as one sees in person. The radiologist does not usually see the patient anyway. The program is very successful.

Senator Graham: There are so many questions, Mr. Chairman.

I want to go to Dr. Millar. You talked about inadequate data. You talked about extrapolating data that were available from the United States. Why are the data inadequate? Why are they not available in Canada?

Dr. Millar: It has not been adequately funded. It is as simple as that.

Senator Graham: It is a funding problem?

Dr. Millar: With the $95 million we have for the Roadmap, we were able to develop, for example, performance indicators for primary health care or home care. That amount of money will allow us to establish the performance indicators for those sectors.

However, in order for those data to begin to flow, the provincial governments have to actually put in place the data entry systems, the computers, the hard wiring - many millions of dollars on top of that initial investment - in order to get the data flowing. That has never been done. All we have ever attempted to do is collect data on hospitals, and most of that has been around expenditure, number of beds, length of stay - the management type of thing - and not the outcomes.

It has never been part of the traditional mentality that has existed in health care. It is not limited to this country. It is the same everywhere in the world. We are, in many ways, ahead of most.

Senator Graham: In your remarks about quality issues, you talked about the overuse of antibiotics. How prevalent is that and who is responsible?

Dr. Millar: It is widespread. Responsibility is shared among patients, doctors and pharmaceutical companies. Nobody has hard numbers, but we know that the practice is widespread. In fact, it extends into veterinary practice. There is a huge amount of antibiotics used in animals that affect human beings as well. It is very widespread.

The good news on this front is that there are initiatives in the physician community to encourage more responsible prescribing.

It goes back to the patients as well. They get a sore throat; they expect antibiotics, and they put the pressure on the doctor. If the doctor does not give it to them, they go to someone else. There are many systemic problems here.

Senator Graham: Perhaps more money, which we have talked about before around this table, on education and preventive programs would be useful in this respect?

Dr. Millar: Yes. In general, education and preventive programs are always a good thing. One has to be very careful to think through how one does this, because education by itself does not always get the desired results. Sometimes you have to use other means. One of those is obtaining good data so it can be properly managed.

Senator Morin: I have two questions for Dr. Millar and two questions for Mr. Pascal. I will start with Mr. Pascal.

Everything we have heard this morning is extremely important. We cannot move fast enough in this field.

How much of that is specifically a federal responsibility? We are looking at things from a federal angle.

My second question is: Could you give us a definition of e-health and the role of the private sector? I realize it plays an important role in the United States. Do you see a role for the private sector in e-health here in Canada?

I want to congratulate Dr. Millar for this excellent report. There was very good press coverage yesterday from most newspapers. This is really the way to go. Assessment of our system has been lacking, and it is extremely important.

You referred, of course, to $1 billion, the funding for the total health information system. How much is CIHI's budget? How much would you need, ideally? You said much information is lacking. How much funding would you need, and how much of it would be federal?

You will remember, Mr. Chairman, we discussed earlier the possibility of creating a position of surgeon general in Canada. In a way, this is really a surgeon general's report. I was wondering if Dr. Millar had any views on that.

Mr. Pascal: We represent the 14 jurisdictions. We service just under 1 million people federally with direct health services, be they through First Nations, Veterans Affairs, DND, RCMP and those in correctional institutions. We have an active role because we want to ensure that the services we provide are equal to any others in the country.

In a broader-based system, we carry out a unique and very active role in the country. We are rather like a broker in trying to find the common ground on which we can work across jurisdictions. In the health world - and this is my view - you cannot go it alone. There are just too many pieces in the health system. You have to look for partnerships, and you build on your competencies. Federally, we have competencies. We can do things from a research and information-generation point of view. We can set broad policy frameworks, CHA being one in which we would like the health system in this country to operate. We are best positioned to carry that out. The provinces and the territories are in the best position to carry out the actual delivery of services to people within their jurisdictions.

We are looking at how to build on our competencies and where to find the areas in which we want to work together. That is a role we have played for a number of years. It is an area in which we will continue to play a role, especially as we try to move more aggressively into the e-health environment.

Senator Morin: Can you define "e-health" for us?

Mr. Pascal: I view e-health as those parts of the practice of providing care in which you can start to digitize the processes. I am saying you have to be careful. There will always be parts of our health care system that will not be moved into an e-environment because they have very high touch dimensions to them. We are providing the ability to digitize processes, to digitize the way information can be transmitted, be it radiology, imaging or video conferencing, which allows care of individuals to be provided in a more efficient and effective way.

As for the private sector, once again it comes down to my belief in competencies. Governments are very good at setting the frameworks within which fairness and equity are maintained in this country.

The private sector operators are very good operators. That is where many risks are taken. It is where a lot of the thinking and innovation gets done. Governments have to look at how to work with them.It is still my belief that the running of the health care system, and ensuring that the right public policy framework is in place, will always remain within the purview of governments.

Dr. Millar: Let me start with the question about the surgeon general. I know this question was addressed by the National Forum on Health. They concluded that it was not the best way to go in Canada. I am inclined to agree with that for two reasons.

When people think of the position of surgeon general, they think of the work of C. Everett Koop. There is no question he was effective on abortion, tobacco and HIV issues. Since his time, that position has been pulled back within the bureaucracy. They now operate under the auspices of something called "Healthy People 2010." It is a very highly structured, bureaucratic enterprise in the public health arena. It is no longer a model to which I think we can look.

In this country, the national forum decided it was not such a good idea, because the notion of a federally appointed individual making pronouncements on provincial programs might not be well received. Instead, they said, "There is a need for a similar function. We need a way of reporting regularly to the public on how healthy they are, on the determinants of health and, perhaps, on the performance of the health care system, but we think, in the true Canadian way, this is better done through a cooperative federal-provincial process." They suggested an institution like CIHI take on that role. In fact, the $95 million coming to CIHI for the Roadmap project was meant, in a sense, to meet that function of reporting to the public.

I think that we can fulfil those functions, given the ongoing funding relationships. That brings me to the answer to your second question. The $95 million, you will recall, was split three ways. Some $40 million went to Statistics Canada, where it is largely being used for the Canadian community health survey; $20 million is for the Canadian Population Health Initiative, which has been folded into CIHI; and CIHI received $35 million. That is $55 million over four years to CIHI. That has roughly doubled our operating budget, taking it from $12 million up to about $25 million per year. That has moved the ratio that you asked about from roughly 50 per cent federal, 50 per cent provincial, to 80 per cent federal, 20 per cent provincial. That is where we are currently. We are just over halfway through the Roadmap funding. That cycle comes to an end in a year and a half.

Right now, we are in the process of seeking a renewal of that money. To answer your question very specifically, just to maintain the current investments, we would be looking at a level for our operating budget at around $25 million. To move into new areas, such as the extremely important ones like capturing the degree of health system error to which I alluded, as well as capturing performance in primary health care, we would need some increases to that, probably in the order of 20 per cent and up.

Senator Cook: I can assure that you have done one thing this morning. You have taken my thought processes completely outside the loop.

I would like to consider how we look at these new data, this new information and vision as to how we deliver this kind of health care to our people, which I suppose is the ultimate goal. Given this new dimension, how do you see this impacting on the current curriculum in our medical schools, our schools of nursing and our technical colleges? Do you see this as an added course for doctors and nurses? Where do we go with this?

In my mind's eye this morning, I am looking at the stressed-out nurse on a hospital floor trying to do what is best for a patient, and I see all this wonderful material emerging from all kinds of places. My mind is on overload. How do you see that manifesting itself to help the clients?

Dr. Millar: This material is already being brought into curricula. The report you have in front of you, in its previous iteration, has already been brought into the universities and is being widely used as a textbook for nurses, physicians, et cetera. In terms of the "new public health," if you like, many of the medical schools have specific courses on population health. Thus, medical students and nurses are being educated very broadly. Perhaps Dr. Filler can comment on how we address mistakes.

In some places, they are taught that you immediately tell the patient. You apologize, and then you do everything you can to correct it. We are seeing very good outcomes where that is being done. I know that is being introduced in some curricula, but how broadly across the country, I cannot tell you.

Dr. Filler: Certainly at the big teaching hospitals, most individual programs have what are called "morbidity and mortality rounds." These issues are brought up on a regular basis. For example, that is done on a weekly basis in my program. All the mishaps, anything that might have been wrong -or maybe it was not wrong, but there were bad outcomes - are discussed at conferences. They are discussed, not with disciplinary action in mind, but with the intention of preventing that event from happening again. There are many similar practices in some places, but it is patchy. It may never happen in community hospitals, because they are not organized for it. These are very important elements in trying to correct the systematic problems.

Senator Cook: Did I hear you say that provincial health jurisdictions would be encouraged to get this database up and running so that it would be accessible?

Dr. Millar: The databases that I was referring to, yes. If we want better data on performance in primary health care, home care, the use of pharmaceuticals and mental health, the provincial governments, of necessity, will have to invest in creating the systems to provide those data.

Senator Fairbairn: Dr. Millar, one thing raised a red flag with me when you spoke about obesity in youth as an epidemic. That sent me scurrying to your report, in which you tell us that in 1981, 15 per cent of boys and girls were overweight. This grew to almost 29 per cent of boys and 23 per cent of girls in 1996. Over that same period, childhood obesity more than doubled.

I was at the National Sports Summit several weeks ago, where one might have assumed that we would be hearing about competition and excellence - which we did - but one of the basic issues discussed was the decline in participation in sports and athletics by children in this country.

When people were asked why this had happened, we got into cutbacks and similar issues from several years ago. In part, the programs and facilities are not available now in the school system or the community to the degree they used to be. There are also competing adventures for young people, in that they are disinclined to partake immediately in sports, and gravitate towards more sedentary activities, such as computers.

Will this area truly be targeted in the program for health education? As you point out, the down-the-road consequences that will have on an adult population are frightening. Previously, parents of a slightly round child were often told they ought not to worry about it, that the child would grow out of it. Some of the things that you and others are indicating mean that is no longer a given.

I am curious to know whether, in all the talk of public health communication and education, you feel there should be a much sharper focus on this subject, because it truly is a national problem?

Dr. Millar: This is a subject on which I could speak for some time.

Senator, you are asking about the policy implications of a finding like this. Part of our mandate, presuming that it and the resources continue, is to do exactly what you are asking. We can do the policy analysis, publish a report and get it into the hands of decision-makers across the country.

We have the mandate and we will shortly begin to do that. There is an issue of double jeopardy. Not only are these kids facing a problem of increased obesity, but they tend to be kids living in low-income circumstances. There is a financial barrier here to taking part in many of the sporting opportunities that more wealthy children have. The problem compounds itself. There are issues of access to physical activity and of nutrition. Schools no longer have linear physical education, and they are also feeding the kids fries in the cafeteria. It is not too hard to begin sketching out the policy implications here. We will be acting on that.

Senator Fairbairn: I look forward to it.

The Chairman: I thank the three witnesses for coming. We look forward to hearing from you again on the privacy issue, Mr. Pascal, in early September, when we reconvene after the summer break.

Senators, our final witness for today is David Cowperthwaite. I did not know you had changed the name of your department to the "Department of Health and Wellness." I think that is a terrific step forward. I am delighted with the title. When you are making your opening remarks, you might tell us when you made the name change and why, because I think it is an important perspective issue.

Mr. David Cowperthwaite, Director, Information Systems, Department of Health and Wellness of New Brunswick: Honourable senators, the New Brunswick Department of Health and Wellness came into effect a year ago, when the Government of New Brunswick decided to split off the family and community services function into a department called the "Department of Family and Community Services." The Department of Health is operating health care, public health and mental health services directly, and still administering the other financial programs.

We will go through another interesting change in a year, when we create regional health authorities. That is another thing I could talk about for an hour.

The issue today is the provincial perspective on the health "infostructure." I have presented a brief on which I will make a few comments. I will hit a few of the key points. The good news in Canada today is that there is certainly a wave of collaboration in terms of governments working together on health information systems. That is good. It is somewhat of a forced collaboration, driven by financial necessity. Provinces and territories are hurting in terms of the money available to address needs. Your speakers this morning spoke about the relatively low levels of investment in health infostructure in Canada.

We need to do more to provide good care for Canadians as well as effective management of the system.

Governments in Canada have a plan to address these needs. It is based on a February 1999 report called the "Canada Health Infoway: Paths to Better Health," and the various committees you heard about this morning have expanded on it - for example, ACHI, the Advisory Committee on Health Infostructure - and produced a national health infostructure blueprint and tactical plan.

Beyond that, provinces and territories have built their own detailed plans, which take the same ideas and go a step further. I have included in the package, as an example, the New Brunswick plan for health infostructure. As you look at these initiatives, you will find a common vision, federally, provincially, territorially, and within the regional health authorities, on what needs to be done in health infostructure. We are all pointed towards the same target and have some degree of common opinion about how to get there.

That vision, and the one being developed in New Brunswick as well as other places in the country, is very much a decentralized solution. We do not see one large computer with all the data lumped into it. We will not get anything accomplished that way. Our approach must be based on building a series of compatible, comparable and interconnected databases. I would like to refer to this idea, perhaps simplistically, as an "islands and bridges strategy" which builds islands of like information, whether a hospital information system, lab information or immunization information. These separate islands would become an integrated island large enough to produce operating efficiencies. Bridges that allow data to move with the appropriate security would cross-reference and interconnect the islands of information.

This approach will allow us to build the national health infostructure step by step. It is a practical way to accomplish something.

Referring to the New Brunswick report, you will see we adopted that same islands and bridges strategy in our more specific plans. We need more information to manage the health care system and deliver good quality care in Canada, but first we need to manage the information we already have. We are not doing a good job of that. There is a great opportunity to gain significant benefits by integrating and standardizing the pieces of information we hold. Much of my commentary, in the briefing and the other work, refers to integrating what we have and making it more readily available.

There is a problem in how the federal government supports the development of health care initiatives and IT in Canada. The approach it is using actually encourages regional disparities. I will use the example of the recently announced Canada Health Infostructure Partnerships Program, or CHIPP, which was mentioned this morning. It will invest $80 million in telehealth and electronic health record development. The federal funding was limited to 50 per cent of the eligible costs to a maximum amount for each project. We almost got this one right. It is too soon to judge CHIPP overall, but there is a problem emerging with this approach. The requirement for matching funds means that those who have currently funded projects can get money to advance them further into a national mode. While this is attractive from the point of view of leveraging further federal investment, it means those who already had money received more through CHIPP. Those with the greatest financial or regional-disparity-related needs did not have an opportunity to apply.

CHIPP represents a recent piece of history at which we can look. The real opportunity is in the Canada Health Infoway corporation you heard mentioned this morning. First ministers have agreed to invest $500 million in this new corporation to advance the electronic health record. This corporation is in the process of developing its strategic focus. If it takes the same path as CHIPP, and invests only where projects are already funded, it will perpetuate the rich getting richer instead of dealing with regional disparity. The approach recommended in that national blueprint and tactical plan that Mr. Pascal referred to specifically discusses the need to focus on areas where there is great need, a willingness to act and a commitment to implementing the resulting change.

The other point I wish to make is on the balance between development and deployment. Dr. Millar gave me an excellent introduction by talking about the work of the CIHI Roadmap. While we recognize the value of CIHI's work and the report they have just produced, the Roadmap initiatives are creating a number of new databases. Without a matching strategy for deployment, CIHI will create empty databases, and the money from the Roadmap will not produce returns for us in managing health care in Canada. There must be a balance between deployment and development. We have to move the developmental cycle into full deployment to get the benefits. If we want to improve health care, we must have full implementation of the systems that cover the breadth of the country. We are not doing a good job of that.

Finally, I want to touch on privacy of personal information. Instead of ignoring this issue, as might have been done historically, legislative efforts are being made to deal with it in a consistent way. Ministers of health in the provinces and territories are in the process of signing an accord to address the harmonization of privacy legislation and to commit to the principles of the CSA model code for privacy. We are setting a standard and making a commitment to adopt it. New Brunswick has signed this accord, and has gone a step further. Last month, we proclaimed the Protection of Personal Information Act, which in effect implements that CSA model code for government- managed information in New Brunswick, including personal health information.

This issue is significant. I believe that many New Brunswickers, and other Canadians, are generally trusting of and comfortable with government management of information. As long as they see a reason and a benefit for sharing information, they will be willing to consent to that. However, some people will choose privacy over sharing information. In doing so, they will also choose to receive a lower level of health care. I do not think we can do anything about that. We need to show the benefits to their care delivery of sharing the information. We need to educate them further about their choices, but some people will choose their privacy over their health, and I think we have to respect that.

You are dealing with a number of issues in the Canadian health system and taking a 25-year perspective. In the provinces and territories, we understand the need for and appreciate the value of such long-range planning. We are drawn to a shorter time frame for the infostructure issues. We are dealing with technologies with an effective life of three to ten years. We have to deal with obsolescence and system-replacement cycles. Day-to-day care delivery demands we take a short-term focus in getting the information to where it is needed when it is needed, and that is now.

Short-term focus does not mean short-sighted, and we are looking at these long-term goals for the electronic health record as we build it day by day.

We can improve health delivery in Canada today by integrating and standardizing the information we have and using what is available now. After that very brief introduction, I would be pleased to answer questions.

The Chairman: I have a number of questions, but I will begin with Senator Cohen, who is from your province of New Brunswick.

Senator Cohen: Does protecting personal information also apply to the private sector? Do the same rules apply?

Mr. Cowperthwaite: No. The bill in question deals with the public sector. The private sector is the responsibility of Bill C-6. We have not tried to write legislation where the federal government has stepped up to address the issue.

Senator Cohen: In your tactical plan report, I particularly noticed Recommendation 3, to establish a Health Information Standards Council and set priorities for standards development based on tactical plan requirements. Would you elaborate on that?

Mr. Cowperthwaite: There is a good process in place within New Brunswick government departments to address standardization of information.

We need to call a spade a spade, and not a shovel. It seems a little obvious, but doing that is often difficult. We need a whole structure of data definitions. We are doing it in that departmental cycle fairly well. We are not doing it all that well in the rest of the health care system.

The intention of that recommendation is to bring together a group of people who will develop standards in collaboration with CIHI, because we do not want to invent something, but rather to adopt a national standard appropriate to New Brunswick. It will be a to-and-fro, collaborative approach. We have had CIHI people participating directly in some of our recent projects to make sure our standards development complements national standards and helps solve some of the problems with those.

Senator Cohen: Do you think that will be a very effective tool?

Mr. Cowperthwaite: I believe so, yes. A fair number of people are involved in the system and ready to participate in this. I would say the hospital and institutional sector is strongly onside with this recommendation - obviously, as it is part of the report. The department is onside. In New Brunswick, we have not yet successfully engaged the physician community in electronic health records development for their offices. I cannot speak for them.

The Chairman: Can I pursue that? The primary data are generated by the physicians out there in their offices. Right? How do you go about trying to get them involved in the electronic collection of those data? Does that require a change in your funding policies? I ask that because perhaps from their point of view, it takes a lot more time to put the information into electronic form as opposed to just scribbling it in a patient's file. Therefore, to the extent that they are then able to see fewer patients and we continue to have fee-for-service, in a sense, you are costing them money. Do you have any thoughts on that or a game plan for dealing with that issue?

Mr. Cowperthwaite: You are right. Certainly the view of the physician community is that they are not there to collect data for government; they are there to serve patients. Fee-for-service just exacerbates that attitude. They do not want to capture any more information than is necessary and relevant to serving their patients. Our strategy is multi-fold. First, we will manage our own data better by integrating the information that the government currently holds and presenting that to the physicians in a more useful format. A physician told me recently during one of our consultations that whenever a patient arrives in the emergency room, the first thing they do is turn to the hospital system for a complete record of every visit by that person to that hospital. We want to extend that into their offices and make that more complete. They will see the value in that, and we will be able to get some fairly short-term return just by using the data we have. When we get to that point, I believe we will be able to make the case that adding more data from their records will make it even better for them. Until we show that we can manage and deliver data in a way that they can use in the current fee-for-service environment - and that is not changing in a hurry - I do not think we can sell them on capturing data and they will stick with their scribbling.

The Chairman: Therefore, no matter how good the development of the electronic side of the system may be nationally and provincially, that is, getting the systems in place, there may be a real problem in getting the primary data into the system.

Mr. Cowperthwaite: Yes, there will be. When you have the hospital information, the lab information, the pharmacy information, and all the visit information from medicare, you are still missing the diagnosis.

The Chairman: At the GP level?

Mr. Cowperthwaite: At the level of the local GP in his office. That is the big missing piece.

The Chairman: That is a crucial piece.

Mr. Cowperthwaite: I agree.

The Chairman: I am wondering whether this is a potential problem down the road.

Mr. Cowperthwaite: Absolutely it is.

Senator Fairbairn: Mr. Cowperthwaite, when we hear someone of your reputation and knowledge tell us that some of the new funding mechanisms may be encouraging regional disparities, we must be concerned. You tell us that currently funded projects have the opportunity to get more out of these new initiatives, while those with the greatest need do not have a proper opportunity to apply. Am I reporting you correctly?

Mr. Cowperthwaite: That is correct.

Senator Fairbairn: I would like to have you elaborate on that and also ask if you have any data that would give us a picture of where in the country people are being disadvantaged by a well-meaning effort, because that is not what we want in this country.

Mr. Cowperthwaite: I would like to stick with the CHIPP program that I mentioned in my briefing notes as the best example. This is a good program in almost every sense. There was consultation with all provinces on its design and the criteria for project selection. Members of this advisory committee of deputy ministers, ACHI, also participated in the actual project selection. There would be a connection between what the left and right hands were doing. That part was done very well. However, it was 50 per cent funding only. One of the requirements was that you had to demonstrate that you already had 50 per cent of the funding for the project. You had to be at least halfway there to apply for money to go the rest of the way.

I could cite a number of examples in New Brunswick of where there were opportunities to do useful things in health care delivery that were not even considered for application to CHIPP because we knew we did not have the first 50 per cent of the money. We did apply in one area, the telehealth field in radiology. We were selected for that, and we were grateful for that additional funding that permitted us to advance one of our needs, but a lot of other things were not done. I think the federal government's program, which was focused on development and spending 50 cents to get a dollar's worth of return, misses an opportunity to balance some of the needs. I have a suspicion that there are other instances where people had valuable project opportunities and great service needs that we just never heard about in the CHIPP program.

Senator Fairbairn: Do you believe that these difficulties might be more pronounced in Atlantic Canada than elsewhere?

Mr. Cowperthwaite: I can say that these are very common in Atlantic Canada. I know some of the people in the territories have a similar view. I do not feel equipped to speak on behalf of the other provinces.

Senator Graham: I was encouraged, and I am sure we all were, to hear that you are enjoying a wave of collaboration between the federal government and the other jurisdictions.

I was puzzled by your saying that some people will choose privacy as their primary concern and refuse consent to share information, and that by doing so obviously they will choose a lower level of health care when their caregiver does not have access to available and relevant information.

Could you elaborate on that and perhaps give us an example? It seems to me that they have already opened the door by going to a health care provider, whether it was the local GP or whoever, and yet you are suggesting that some people will refusing to provide information that is necessary for their treatment.

Mr. Cowperthwaite: Let us take an example, and I will make it personal. I was in a clinic with my son not long ago after he had cut himself. They wanted some information before they stitched up his thumb. It is a fairly simple situation. They asked a couple of questions. Now, if he had had some history of abuse that might have been noted in the government files that record family violence situations, and if that was available to the emergency room doctor, it might have raised a suspicion that could have led to better health care. If the child had been seen for a series of cuts over a period of time, it might have indicated a problem of self-abuse, for example.

In the current situation, you have whatever you choose to tell the caregiver at the time. The caregiver gets whatever information I can remember, and that is used as the basis for care. If there is a full electronic health record, and you let the caregiver look at that, he or she may be able to see patterns that would not come out otherwise. It is difficult when people are in a rush to deliver services, because our system is obviously taxed by the number of patients that need to be seen, particularly in a hospital emergency room. It took six and a half hours, by the way, for a cut.

Senator Graham: How much waiting time did that entail?

Mr. Cowperthwaite: Six hours and 23 minutes.

Senator Graham: Seven minutes for the stitch.

Mr. Cowperthwaite: Yes. The kicker was, the doctor said that it was healing up nicely, so he would just put a Band-Aid on it and send us home.

Senator Morin: I believe the figure quoted this morning was that 82 per cent of Canadians are satisfied with the care they receive. Were you satisfied with the care you got?

Mr. Cowperthwaite: My son is healthy; I am happy about that.

Senator Morin: You are satisfied.

Mr. Cowperthwaite: To get back to answering your question, it is that breadth of information that other caregivers have that should be available when treating a patient. Whether it is a GP in an emergency room or one of our tele-triage nurses, it is the same thing. We run the tele-triage service. We can phone up and talk to an emergency room nurse to decide what needs to be done about a situation. The breadth of information that is available determines what that nurse's judgment will be about whether to send you to an emergency room, to your doctor the next day, or to just tell you to take care of it yourself. If you do not make that information available, if you choose privacy, either by not volunteering information or by saying they cannot look at your electronic record, you are choosing a lower level of health care.

Senator Cohen: How much should Canada invest in the Canadian health infostructure as a percentage of total health care spending?

Mr. Cowperthwaite: I think we need to double the amount. You heard figures this morning indicating that we are spending 1 per cent to 2 per cent, when other information-intensive industries are spending in the 7 per cent to 10 per cent range. There would be good value for real care delivery in doubling the amount. I really believe we could produce that. In New Brunswick, we could improve access for people in rural communities, which is one of the current priorities of our telehealth initiatives.

The Chairman: I wonder if I could go back to your privacy act for a minute. I believe you said that it only covers the public sector.

Mr. Cowperthwaite: That is correct.

The Chairman: Suppose a person goes to a private lab. You take in a requisition from your GP, or even from the hospital, to get a blood test. Your act presumably does not cover what a private sector lab can do with that data. Is that correct?

I am trying to understand exactly what is private and what is public in your mind. That is a private sector institution doing some work at the request of a public sector doctor.

Mr. Cowperthwaite: The example does not quite work in New Brunswick because we run all of the labs through the hospital system. Let's take an example where a doctor wants to send you to a private physiotherapy clinic.

The Chairman: Would your medicare program cover that?

Mr. Cowperthwaite: No. It would be a private service. The act would not dictate what that physiotherapist could do with the relevant health information.

The Chairman: The federal Bill C-6 does.

Mr. Cowperthwaite: That is correct.

The Chairman: The federal Bill C-6, in its current form, would prevent that physiotherapist from sending information back to the doctor without the approval of the patient?

Mr. Cowperthwaite: Right. The doctor could send someone to the physiotherapist. In the course of doing what the doctor asked, the physiotherapist could observe another, very serious problem, and would be bound not to share that information with the GP.

The Chairman: However, in many provinces the labs are privately run institutions. Bill C-6 says that the doctor can send you to get a blood test, but cannot get the results?

Mr. Cowperthwaite: Not unless you want the doctor to receive them.

The Chairman: The absurdity of that has always blown my mind since we were made aware of this problem a year and a half ago. In any event, from a provincial viewpoint, would you consider it critical that we solve the apparent problem with Bill C-6?

Mr. Cowperthwaite: I believe that in most instances, if I were a patient being sent to physiotherapy and were asked if the physiotherapist could share the results with my doctor, I would say yes. I believe that most Canadians will consent; therefore, I do not believe it is that problematic. However, there will be a few who will choose not to consent.

Senator Morin: Currently, we do not need consent to have this type of information go back and forth. It is an added procedure, with added cost and added paper. It is more than you say.

The Chairman: Our concern is that its real impact is on the research committee, where you are aggregating data, for example, on diabetes, and where in many cases, the individual patient is not even known to the researcher.

Senator Morin: It is not only a private decision. I am sick, but I do not take treatment; that is private, unless I have an infectious disease and then a judge may force me to accept treatment. There is the common good, too, as in the report we got this morning. We did not ask for consent from all these people who had bypass surgery. If we had asked, we would never have had such a good report. I think the common good is important. It is not only a private decision with private consequences. We would not have reports like the one we received this morning if we had to obtain everyone's consent to having the information being transmitted back and forth.

Mr. Cowperthwaite: You are certainly correct. My comments were focused on the area of identifiable personal information, as opposed to aggregated information.

Senator Morin: No, this is identifiable. If I have bypass surgery in the hospital, they must be able to follow me to see if I will die in a year's time or six month's time. This is identifiable information. That is not aggregated. It is very important. It is personal, identifiable information.

The Chairman: Thank you very much for appearing before our committee. Your comments on the need for funding for deployment and other things fall on receptive ears, since the majority of the committee members are from Atlantic Canada.

Senator Fairbairn: That also includes those who are not from Atlantic Canada.

The Chairman: That is correct - even those members who are from rich Alberta.

The committee adjourned.