The Mandate of Ontario’s Women’s Health Council

Head Table Guests

Catherine Steele, Vice-President (Toronto) and Partner, Gervais Gagnon Covington & Associates and a Director, The Empire Club of Canada; Dr. Diane Bridges, D.M., J.P., Director of Pastoral Care, Brampton Memorial Hospital; Zahra Kanji, Grade 11 Student, President of Student Council, Bishop Strachan; Virginia McLaughlan, Vice Chair of the Board, Sunnybrook and Women’s College Health Sciences Centre, Women’s College Campus; Mike Cloutier, President, Searle Canada; Pat Campbell, Office of the Chief Executive Officer, Sunnybrook and Women’s College Health Sciences Centre, Women’s College Campus; Joanne Arh, Vice-President, Women’s Health, Eli Lilly Canada; Dr. Anna Day, Chief of Medicine, Sunnybrook and Women’s College Health Sciences Centre, Women’s College Campus; and Gareth S. Seltzer, Chairman, Funds Development, The Canadian Breast Cancer Foundation, Vice-President, Guardian Capital Advisors and Immediate Past President, The Empire Club of Canada.

Introduction by George L. Cooke

It is my pleasure to introduce as our guest speaker today, Ms. Jane Pepino, Chair of the Women’s Health Council. This is a new role for Ms. Pepino and she is here today to provide us with information about the Council, its role and responsibilities, and some of the challenges she expects to face in this new position.

A graduate of Osgoode Hall Law School and the University of Texas, Jane Pepino is a partner in the Toronto law firm of Aird & Berlis. In her law practice she concentrates on development, planning and municipal law, acting both for the private and public sectors.

Over the past two decades, Ms. Pepino has served on a number of boards and commissions. She is currently Chair of Women’s College Hospital, and a member of the Board of Sunnybrook and Women’s College Health Sciences Centre and the Bishop Strachan School.

She served for 10 years as President of METRAC, dealing with the issue of violence against women and children. Ms. Pepino has also served on the Ontario Human Rights Commission, the Metropolitan Toronto Board of Commissioners of Police and the Canadian Advisory Council on the Status of Women. In addition, she has chaired a number of special enquiries and task forces on topics as diverse as correctional half-way houses, women in politics, temporary absences from prison and dangerous offenders, police-community relationships, and violence against women and children. Ms. Pepino, welcome to The Empire Club of Canada.

Jane Pepino

Thank you for the generous introduction. I’m very pleased to be here today to give you an update on what’s happening in women’s health.

It was the Minister of Health, Elizabeth Witmer, who persuaded me to take on this role as Chair of the Women’s Health Council. I know her personal commitment to the issue of women’s health and that was the main reason I decided to accept the role. I look forward to working with her new Deputy Minister of Health, Jeff Lozon, who has just started in his new position–the job many people refer to as the worst job in the province. The new organisational structure at the Ministry should ease that, and the Council promises not to make that job any harder than it has to be, but we will be asking the Ministry to view things and then do things in new ways, on the basis of new attitudes.

There has been a lot of lip service to the subject of women’s health over the past decade, and it has made cynics out of a great many women. My personal feeling after working with the hospital system has been one of frustration, that the health system is not a system, but rather a collection of redundancies, gaps, ingrained funding structures and lengthy processes that can be counter-productive.

Two years ago if anyone had suggested yet another committee or working group I would have had doubts about the value of such a process. Advocates for women’s health already had some clear priorities about what needed to be done, but no one seemed to be moving forward or supporting new ideas. I would have said, "Give us some money, some teeth, some power and some freedom to move, or get out of the way."

Then I had a chance to talk with the Minister about what she really wants and how important it is to get through the transition from talking to doing. How do we put some fuel into these concepts and get moving? Over time I began to see what an inspired radical this Minister is. And then I began to really like her.

By the time she asked me to chair the Women’s Health Council I was thinking: "This is terrific, I know exactly what I want to do and this Minister is genuinely committed to women’s health. We’ll have everything we need to get going: money, teeth, power and freedom to move. Hallelujah!"

And I also remember thinking: "This is a huge task; where will I find the army to help get it all done?"

I can tell you today that I haven’t had to ask Mel Lastman for that special phone number. The army we need in order to generate true reform in women’s health is already in place. They are disguised as parents and people with parents, research scientists, CEOs of hospitals and health industries, educators, and health professionals in every city in the province. Even a few lawyers.

And now they have a voice. The opportunity for constructive advocacy–to move from talking to doing–needs a place and a forum and often a microphone. The voice of women in this province now has a place to be heard, and a group who are mandated to be their advocates. We have microphones. We have e-mail. We have access to the best and the brightest to advise us on what works and what doesn’t. Thanks to women advocating for their own health for many years, the Women’s Health Council can begin to advocate for them and with them.

Over the past several months I have met with dozens of organisations to talk about what it means to women to have a health system that doesn’t know what to do with us. Women don’t even have heart attacks the right way, which means we don’t have heart attacks the way men do, and that’s the only kind that anyone knows very much about.

The first thing you learn in a position like this is the importance of looking at every question through a gender lens: in other words, asking "how will this impact women; have they been included?" Rather than focusing exclusively on hospital-based programmes and services, even research, we have to examine the entire continuum of care to see how it affects women.

Does the health-care system do more than treat the current illness? Are women receiving the help they need to maintain health, prevent disease and manage the risks that jeopardise their health? Do we have any models of health-care delivery that are capable of addressing women’s health-care needs?

I’m reminded of the motto from Women’s College Hospital Non quo sed quo modo–it’s not what we do, but how. The idea is that different models of care and a different style of care can make all the difference, rather than just more people providing services in more places. It’s an attitude that says women come first, and respects the realities of their lives, in something as simple as scheduling or changing appointments.

Because that motto "not what we do, but how," was turned into reality with innovative, responsive programmes, the World Health Organization named Women’s College Hospital the only "collaborating health centre" in the Western Hemisphere. In other words, we were asked to teach our model of health care to other institutions in other countries.

That philosophy differs remarkably from the routine experiences of women in Ontario. To be on the receiving end of health care that simply treats her broken leg without ever addressing her risk of osteoporosis is simply unacceptable to women in this province. Next year you can repair that leg again, or a hip, or an arm. Doesn’t it make more sense to help the patient prevent the disease of osteoporosis, or, once diagnosed, to manage it rather than continue like this? As part of managing one’s personal health, doesn’t it make sense to understand what types of health-education programmes have the best recruitment and retention; what types of programmes do women respond to best?

The National Academy on Women’s Health Medical Education adopted a definition of women’s health in 1994.

"Women’s health refers to an interdisciplinary and multidisciplinary approach to conditions that hold greater or different risks for women, or are more prevalent in women, where care is based on research that incorporates physiologic and psychosocial gender differences."

That definition means far more than doctors treating episodes of illness. It recognises that the way we live, the pressures and demands and limitations that are placed on women, affect women’s health and in a way that is different from men. Not just today’s sense of well-being, but also the risk of future illness and a woman’s willingness or ability to adhere to the treatments prescribed and therefore mitigate future risks. Those risks have to be recognised in conjunction with the physical realities of very different bodies that do not react to treatments the way that men’s bodies do.

That’s a powerful combination that is often not well handled by any one health professional. The family practitioner needs the benefit of expert support from specialists and allied health professionals and–get this–they need to talk to each other. They need to talk to the women whose lives they are planning, they need to work together and they need to have technology and other communication tools to support that effort.

Does that sound radical? Apparently it is.

Today I’ll tell you more about why women’s health is an important issue, and what the Womens Health Council is planning to do about it. I can also tell you some of the encouraging news from the Ministry of Health about priorities for women’s health.

The Council was formally established in December 1998 with 15 members, including me, drawn from a wide range of experts in the academic, research, treatment, public and community-health sectors, as well as from the corporate sector. We report directly to the Minister of Health as her expert advisors. Our purpose is to advise the Minister on how to ensure a responsive, quality health system for women.

We have a mandate to:

• advise the government and key stakeholders on health issues affecting women;

• advocate for improvements in women’s health in Ontario;

• promote women’s health research, identify gaps and disseminate information on current research activities;

• communicate the Council’s activities as widely as possible; and

• provide advice to the Minister on the allocation of the $10 million for women’s health-care projects.

Let me explain what that means.

The first point was to advise the government and key stakeholders on health issues affecting women.

Those of you who are not accustomed to working with government may think that sounds a little vague. But I can assure you that it tells the Council that we are free to speak our minds to the Minister and her colleagues and to anyone else out there–including you–who might be able to help us in our work. Indeed, the Minister has encouraged us to act as a catalyst for change.

Most of you are here today because you already know the women’s health issues that the Council wants to address–or you want to know. My remarks are limited to 25 minutes so I will barely scratch the surface, but here is a very short summary of why women’s health is an important priority.

Women represent 52 per cent of our population and use almost 57 per cent of all OHIP services. It makes sense for those services to be efficient and effective. In fact, a research report last year found that after adjusting those expenditures to account for reproduction and greater life expectancy, current health expenditures for women are very similar to the expenditures for men. But analysing that fact a bit further yields a rather startling truth. Because women have a greater lifetime risk of chronic disease and disability, expenditures equivalent to that spent on men means that women’s actual use of health resources is inappropriately low, once those additional risks are factored in.

All that money has not measurably improved health status or health outcomes for women. When looking at the data either it isn’t enough or it isn’t being used well. Alternatively, and this is equally telling, if it has improved health outcomes no one can tell because the data has not been kept on that basis.

This I believe is one of the areas where the Ministry must lead and drive new thinking throughout the system. There is now abundant information about the diseases and risks that women face at different times in their lives. At the end of the 20th century we are still delivering health care largely on a fee-for-service, single-provider model that defies case co-ordination and makes multidisciplinary and multi-site care an extreme rarity. In that model of care, health providers focus on one small part of a woman’s health needs–usually hospital-based–and that is not good enough. We recognise this government’s commitment to making community-based care part of the health system, but it must be seamless, and it must come quickly.

Women live longer than men do, and older women are the fastest growing segment of the population. Many of us will outlive our doctors, our bosses, our husbands and our political leaders. Apparently our sheer numbers might also mean we outgrow the present capacity of the health-care system to provide health services.

What can we expect 10 or 20 years from now?

If the system is still fragmented–one provider doing one batch of tests to treat one thing and then three months later another provider doing the same batch of tests to treat something else–what have we accomplished? Lots of women sitting in doctors’ offices waiting for appointments. What an extraordinary waste of everyone’s time and money.

What would be so terrible about educating women on their own clinical history and telling them what it means? Would it be outrageous if some health dollars allowed doctors and patients in isolated areas to video-conference a consultation with experts in teaching hospitals? Where is the real waste if the system is unwilling to pay doctors for modern techniques and modern approaches, but instead only reimburses them for treating disease?

There is reason to believe that a re-ordered health-care system would be more efficient. And although we are not willing to assume that re-organisation for the sake of reorganisation is at all helpful, what the Council finds intriguing is the knowledge that we have an extraordinary pool of talent in Ontario, and the most comprehensive range of services of any province in the country. We have the ideal circumstances to design health-care delivery in new ways, so that a personal health map is available to everyone.

We’ve heard about care maps–those treatment plans where the health professionals describe what the patient will need and when and by whom. What no one talks about is the health map. Aren’t we all working toward a patient-centred system where the patient comes first? How did the patient get excluded from the map?

Let’s be specific. If you are a sixteen-year-old female and you start smoking, can’t we draw a map that shows the effect it will have on you for as long as you smoke and for a certain number of years afterward? If you abuse alcohol or drugs on top of that, your body and your mind and your emotional health will start to suffer and here are the symptoms you will notice. If you are stressed, exhausted, not eating well, not exercising, then you should watch for these symptoms and understand that you need help. If you are combining several unhealthy lifestyle habits, this is where your health will fall apart, and this is when.

Is a health map so unrealistic? Can we create an information tool for people to understand in very personal terms just what their lifestyle decisions are going to cost them? Does it make sense to stop lecturing people, which obviously has almost no impact, and start showing them what they will look like and feel like when they are 50 or 60 or 70? Surely we have the tools to address the accumulation of health risks that women encounter–because that is the real danger–and demonstrate the power of taking control over your life that is truly empowering women.

Let’s also keep in mind that women are the primary caregivers for their families, and the burden of caregiving often creates new health problems for women. You may have noticed a report card by the Heart and Stroke Foundation last month. Two-thirds of women are making unhealthy lifestyle choices–and doing so because their families and their jobs take priority. Women assume responsibility for children, the elderly, the sick and the disabled until the woman who is the caregiver gets sick.

I want to take a minute and acknowledge what a difference some institutions are trying to make–like the Heart and Stroke Foundation, which now has a woman’s programme in addition to the general programme. It is extremely important for organisations like that to have a voice and be encouraged to advocate for women’s health.

As another example, hospital restructuring in Ontario secured a continuing voice for Women’s College Hospital, with the goal of ensuring that its innovative thinking and experience permeates throughout a new and larger institution which has as its goal, leadership for the rest of the health-care system in women’s health. Aside from the institutional experience, there are hundreds of smaller advocacy groups in Ontario that need encouragement and opportunity to give voice to their experience. Is there any other way for us to learn? Is there any other way to proceed?

Centres like the Institute for Clinical Evaluative Sciences keep producing reports that women experience inconsistencies in access to health care and the quality of care received. For example, women get more prescriptions and fewer diagnostic tests than men. Variations in the rate of mastectomies performed in different parts of this province remain completely unexplained.

I don’t want to move too quickly over this item. In fact it is exactly that kind of horrifying fact that makes advocates for women’s health into very focused, determined people. It tells us that the health-care professionals, whom we entrust with our lives, often fail to meet their own standards of good science and fail in their duties to their women patients because of outdated assumptions of "what women need."

What are the consequences for women whose bumps, lumps, aches and pains are not diagnosed and not treated or, having been diagnosed, wrongly treated? And what are the consequences for the health system when serious problems are neglected? This reality speaks again to the need for different models of health-care delivery that engage health providers in health promotion as well as disease management, and that require providers to communicate. That means communicating with the patient and with the other professionals who know something about this woman’s health.

In addition to all these complications, the impact of societal pressures on women often shows up in the health system. Violence, sexual harassment, poverty and inadequate housing turn into anxiety, depression, eating disorders, even smoking among teenage women. There is only so much one can ask of the health system, but there is ample reason for government departments to work together before the health system has to repair the damage.

Some of you may have heard about the "determinants of health" and you know that it means all the different factors that will push your health one way or the other. Obviously some of the determinants are genetic–many diseases or disease risks are inherited. Other determinants are about where you live. In relatively rich countries like Canada, where we have all had some form of health care and health education for most of our lives, our odds of staying healthy are much better than in third-world nations.

There are many other determinants:

Personal poverty which makes it impossible to maintain a nutritious diet, or dress appropriately for the weather. On a larger scale, this determinant is about the strength of the economy and its ability to provide good jobs, a decent standard of living and universal social and health benefits.

Inadequate housing affects health because of cold or dirt, infestation or crowding, all of which increase the risk of infectious disease. At the extreme level, it refers to homelessness, which increases the risk of death.

Crime and violence–a risk for all women. Statistics Canada says that 50 per cent of women in Canada will experience at least one incident of physical or sexual assault after the age of 16. Violence is a significant problem for women whether or not the victim seeks treatment from the health system.

Supportive friends and family are extremely important to anyone’s good health, not only for the chicken soup, but for the emotional attention that gives us a sense of worth and connection. The opposite of that determinant is that isolation creates a health risk and isolation is very common among elderly women.

Access to information to make decisions. Health professionals are careful to explain the risks and benefits when patients have to choose between two or three treatment options. How can the patient’s own values and priorities be inserted into that analysis of risks and benefits so that the decisions are personally valid as well as clinically valid? Recent, but not yet published research shows women suffering from a health emergency are more likely to call their daughters than call 911. It’s because they need their personal values to be part of a decision about what to do next. And, perhaps, because they have not been taught to immediately put their own health needs first.

• Another determinant of health is access to professional care, technologies and treatments. I would add that these services need to be available close to home, in a reasonable time frame.

The second mandate for the Women’s Health Council is to advocate for improvements in women’s health in Ontario.

Advocacy is such an interesting word, don’t you think? And this Minister has provided me and 14 other vocal personalities a platform from which to continue our advocacy for women’s health. But now we have also been given the opportunity to consult broadly with women around the province and give voice to their concerns.

The Council certainly intends to do that, but we need to know the script, i.e. what will we advocate for? As we develop the "what" we also need to develop the advocacy tool. That means looking at health care through the gender lens and being vigilant about whom this system is supposed to serve.

It also means making sure that women are at the table, involved in discussions about what is needed and how health care is delivered. It means that any assessment of success or failure has to include the voice of women who are depending on health care; it is not just a matter of being efficient, in management terms, or effective in clinical terms. Evaluation in health care has to measure client satisfaction.

You will find the Council advocating for a health system that is designed to be responsive and flexible, for integrated and co-ordinated services that make it easy for women to find their way through the system, and for innovative new services that reflect women’s real needs.

You’ll find us advocating for government departments to work together on the determinants of health, like sexual assault, housing and poverty. They might not sound like health but they are central to a woman’s health status.

One of the things you might want to watch for is how far along in the spectrum of health care this advocacy is needed. Many of the issues we have to address are so ingrained that we can’t even deal with the urgent reality. We have to start by stepping back a great distance and insisting on better information and education.

For example, I’m thinking about the strangely differing and often rising surgical rates for caesarean sections and hysterectomies and the over-prescribing that women get for health care not just in Ontario, but throughout North America. Five years from now if we are still calling for health professionals to be better informed and actually use the best knowledge that is available, then we have failed. At the other end of the spectrum is monitoring, evaluation and quality control. Five years from now if we are only asking for those tools to be more sophisticated, then we will have travelled some distance toward our goal.

The third part of the mandate for the Women’s Health Council is to promote women’s health research, identify gaps and disseminate information on current research activities.

Health-care services for women–and for everyone, really–need to be based on "best practices" which means the most up-to-date clinical knowledge of what works and what doesn’t. The introduction of best practices throughout the health system will help to reduce the strange variations in surgical rates and treatment choices that women encounter in Ontario.

The present gap in research-based information regarding appropriate prevention and treatments for women is a serious threat to women’s health. We refer to the best practices of medicine, nursing and other health professions as being evidence-based. That means substantive research has delivered specific advice about what works, why and how and when it works, and when some interventions are just wasted. It means that professionals have explored the subject in-depth and come to some conclusions about how to proceed efficiently and effectively–without duplicating lab tests, or taking a hit-and-miss approach to prescription drugs, or performing surgeries that are not useful to the patient.

Evidence-based policies for diagnosis and treatment of diseases affecting women will improve results and reduce costs by eliminating waste and duplication caused by misdiagnosis, over-medication and inappropriate programmes and treatments.

In many cases the answers don’t even exist, because the basic research has hardly ever included women. Some diseases, such as osteoporosis and certain types of cancer, affect women more than men. We need research that is unique to women and focused on women, but the first step is to have research that will even include women. We know that heart disease kills more women than all cancers combined–it is the leading cause of premature death, illness, and disability for women in Canada–but it is still under-diagnosed and under-treated in women. Women have been excluded from research into diseases that affect both genders, with the result that treatments are developed for men and assumed to be appropriate for women.

But we must not forget that research has to move from the lab to the doctor’s office in order to make any difference. Emerging knowledge has to be shared with health professionals in a way that makes it useful and usable. Women who are patients or caregivers need to know what the choices really are and what those choices will mean before they can decide on treatments.

This is such a critical foundation for planning health services that the Council regards it as an urgent priority. It is not enough to insist that more research is needed. What the Council needs to do is find and support partnership opportunities with government, educators, business, health organisations and other advocacy groups so that realistic plans can be implemented. We need to test what best practices exist for women today, and move quickly to make them available.

One of the reasons that I am here today is to ask you to think about ways that your own companies and organisations can join in this effort. When was the last time any of you talked with the research community and said: "We think it’s good business to support better health by finding better answers. We think it’s good policy for our employees or students or customers to stay healthy and to know how to maintain their own health. We’re concerned that the women in our organisation are not taking care of their health and are going to get very sick."

Business leaders and teachers have an enviable opportunity to become leaders, partners and advocates for women’s health. You can make a difference by working with the Women’s Health Council and helping us to disseminate information to women about healthy choices.

The fourth part of the mandate for the Women’s Health Council is to communicate the Council’s activities as widely as possible.

Within the next few months the Council will begin regional meetings across the province to seek advice from women and people interested in women’s health. We want to share information about our own activities and receive information about priorities and issues that need attention in different parts of the province.

Members of the Women’s Health Council will be actively pursuing opportunities to address their colleagues in various settings and keep in touch with you about ways to work together. We will direct a great deal of our energies toward the existing health system to find innovative programmes and projects that help women keep and restore their health.

I want you to know that we believe in two-way communication. We welcome your continuing advice and comments on everything we do. We are committed to an open process where you will always be able to find out what we are doing and why. In return, we ask that you respond. Tell us what you think, what is relevant to you, what you notice and want to see addressed.

This is part of the important role of the Council in giving voice to women advocating for their own health. We believe that women know what is missing and what would have made a difference to their health. We believe that women know their families and know when their children are sick and whether or not a physician is able to recognise it.

The final item on our mandate is to provide advice to the Minister on the allocation of an annual budget, this year set at $10 million, for women’s health-care projects.

The Council is finalising priorities and requirements for women’s health-care projects that would be funded from this $10 million. Obviously we want to use these funds to move forward in a significant way and address the most urgent issues–research, education and specific services that will improve women’s health.

But I want to reassure you that this is not the only money that the Ministry is putting into women’s health. The Minister does not expect–and the Council could not cope with–any expectation that we would be alone out there, solely responsible for women’s health.

In addition to the projects that the Council will recommend for funding, the Ministry has already moved forward with pilot programmes to expand the mandate of sexual assault treatment centres, and has legalised and funded midwifery care in Ontario. Last year the Ministry put $1 million into research for women’s health projects well before establishment of the Council. We now have a joint commitment by the Ministries of Health and Community and Social Services to fund the Bet