Monthly Archives: October 2014

The Canadian Cardiovascular Congress

It is clear that there has been a major shift in focus from acute to chronic care – chronic disease is now on everyone’s mind. I am currently writing this blog entry from the Canadian Cardiovascular Congress, where the first welcoming session began with a long talk by Perry Kendall, Provincial Health Officer of British Columbia. His audience of heart professionals was given a short primer on public health issues. He began by pointing out how much the Lalonde report had changed our understanding of the health field and specifically noted that only a quarter of good health was due to interventions by our current healthcare system. He then covered a range of topics – everything from inequalities in health to obesity. Not a mention was made of infectious diseases, not even Ebola.

The longest part of his talk was about the difficulty in changing the amount of unhealthy food that is being distributed in Canada by a very well-organized food industry. The industry has tried to minimize and even block change in every area from labelling to sodium and sugar content of foods. They declare publicly that they are in favour of these changes, but they work very hard to defer them or stop them entirely. Kendall said that reducing the sugar and fat content of processed food is hard work and would continue to be. For example, the first attempt to introduce voluntary reductions of salt in processed foods at the federal level was rejected out of hand by the Prime Minister’s Office. Efforts to do this at the provincial level will be long and drawn out because of the large number of constituencies. And because compliance is voluntary, there is no certainty when and how the food industry will respond.

He talked quite a bit about the contributors to chronic disease in Canada and could not cover everything. I noticed that on one of his slides there was some material that he did not speak to at all. It is an area where doctors themselves contribute to the ill health of people with chronic diseases, and it seemed like the part they really needed to hear. According to the slide, a significant portion of people with chronic conditions are made worse by overmedication. It was somewhat surprising to me that Kendall did not allude to this problem at all. Here is an area where the heart community could make a difference to public health by developing better practices. Perhaps they were aware of these efforts and there was nothing for Kendall to add.

This became a bit more problematic when I looked through the program. The Platinum sponsors of the congress are AstraZeneca, Bayer, Bristol-Myers Squibb, and Pfizer. I went into the exhibition hall and one of the handouts was a “passport” that you could have stapled at all the important stations to win an iPad. The Passport participants were almost all drug companies. In fact, the exhibition hall was filled with exhibits by drug companies and equipment companies. Becel was the only healthy food company with a stand, and there were almost no exhibits devoted to chronic care prevention.

Right now in Canada, we are the second highest users of prescription drugs in the world after the United States. We spend over $900 per person per year on prescription drugs (Lexchin and Gagnon). I think that this is because our healthcare system offers few options to doctors. If you get high blood pressure, an early stage of heart disease, it is easiest to offer medication to control it. If you have high cholesterol, it is similarly easiest to provide statins. And if you have multiple conditions you will have a good chance of being prescribed many different drugs. Often as you get older these many drugs can cause their own problems.

Our healthcare system is not set up to offer the range of supports needed to avert the four main chronic conditions: heart disease, lung disease, cancer and diabetes. But this deficit is becoming more obvious. I hope that the next Cardiac Congress will be more devoted to averting early stages of heart disease in a drug-free manner, by imposing lifestyle changes. It is time for the change to be more thoroughgoing.


Lexchin, Joel and Gagnon, Marc-André. “CETA and Intellectual Property: The debate over pharmaceutical patents.” Oct 2013. 7 pages. Web. 27 Oct 2014.


Thanks to you

As President of Patients Canada, I’m excited to share with you some important progress for the organization and for patient partnerships generally. I invite your feedback and comments. Find more information about Patients Canada here.

I would like to thank a few of the many people who have helped Patients Canada over the past few years. In the last few weeks, Patients Canada has been represented at several conferences by speakers and patient panels. At a conference sponsored by the McGill University Health Centre in Montreal, there were more than 40 patients present from across the country. They joined over 100 providers from the hospital to consider the future of patient partnerships in healthcare.

In Toronto, a panel of patients presented their perspective to more than 800 members of Family Health Teams from across Ontario. Sandra Dalziel, Cathy Fooks, Alies Maybee, Emily Nicholas, and Sara Shearkhani presented their thoughts about how Family Health Teams can better partner with patients and family caregivers. Next week we will have a patient panel at a Conference Board Health Summit; Brian Clark will be introducing patients as part of a Health Workforce conference in Ottawa; and I will be going to Vancouver to speak about patient decision support in cardiac care. We have been representing the patient perspective across Canada for more than four years and these five conferences mark a significant change that has been developing over that time.

Our first conference was the Patient Centred Primary Care Summit in 2010. We’d been sent a notice about it and upon looking through the agenda, we found that there were no patients listed as participants however there were many meetings about patients. There were researchers on patient centred care, researchers on shared decision making, and even researchers on patient participation. This was a conference on patient centred care and we felt that it was time to bring patients to it. We called on Maureen O’Neil from the Canadian Foundation for Health Improvement (CFHI) to give us a hand, and her organization graciously gave up their slot. We drafted in André Picard from The Globe and Mail; Martin Dawes, the Professor of Family Medicine at McGill; and Abe Fuchs, a former Dean at the McGill medical faculty. They joined two patients, Elke Grenzer and I. We all spoke to the need for the patient voice to be present in healthcare – including conferences like that one.

We learned that many organizations had been working towards patient centred care with little or no patient representation and so this was a wonderful opportunity to begin to change that. Patients Canada, among others, has been bringing the patient voice to meetings across the country for the last four years. Now patients are routinely consulted, and participate actively in conferences and working meetings in healthcare organizations across the country. The last few weeks are not so unusual these days!

In 2007, we worried that patient centred care would come and go – that it would just be another flavour of the month, and we were determined not to let that happen. Our organizing group included Kevin Leonard, Alex Jadad, Elke Grenzer, Murray and Larry Enkin, John Feld, Rosalee Berlin, Ariane Hanemaayer, Anita Stern, and Jan Plecash. They kept us clear to our purposes. We got early help from people from other organizations such as Sandra Dalziel of Patient Destiny, lots of people at CFHI, Vaughan Glover of the Canadian Association for People-Centred Health, Zal Press who started Patient Commando, Ted Ball of Quantum Transformation, and we have received constant support from the Centre of Global eHealth Innovation. Joyce Resin from Impact BC, Willow Brocke from Alberta Health, and many others across the country lent an early hand to keep the movement alive. Individuals like Vytas Mickevicius and Neil Stuart gave lots of time and effort to help organize what has become Patients Canada.

We are growing apace and in November we will have a reunion of early joiners to bring everyone up to date. Here are some of the successes we’ve noted over the past few years:

  • From these few people and with the help of our Communications Coordinator, Christina Spencer, we now reach many thousands of people through our website, open meetings, and social media channels such as Facebook and Twitter.
  • We have had Patients Canada Volunteers as speakers at dozens of conferences across Canada.
  • We have partnered with the Ontario Medical Association (OMA) to sponsor the very successful Patients’ Choice Awards.
  • We have had several books published with the enormous help of Ryan Devitt, and now we have contracts for more to come.
  • We have held four successful conferences that brought together patients, providers, researchers, policymakers, and almost everyone interested in healthcare.
  • We have sat on more than fifty healthcare committees concerned with research, policy development, quality improvement, and patient and family advisory committees. This has been achieved with the help of volunteers and a dedicated staff including Karthiha Krishna and Jennifer Carroll.
  • We have visited organizations across the country to see how they partner with patients and have helped many individuals and organizations to begin and develop the process of patient partnerships.

We are particularly excited for our current initiative. We have received an array of patient health experiences and worked with an ongoing panel of patients and others to identify Key Performance Targets (KPTs) that will make the experience of healthcare better for everyone. We have developed a number of targets and last week I included six of them in my blog. We are currently working on many others as part of a five-year research and application exercise that will, we expect, result in significant change. This work has already had an impact on the primary care performance indicators used by Health Quality Ontario and has informed some of the new standards for healthcare organizations being developed by Accreditation Canada.

We can now declare that we are not a flavour of the month – there will be many more patient partnerships in healthcare, and patients and family caregivers will play an increasingly important role in future healthcare developments. Thanks to everyone who helped so far. We will need you and many more for the future.

Six Key Performance Targets (KPTs) for hospitals

As President of Patients Canada, I’m excited to share the work we’ve been doing on Key Performance Targets (KPTs) with those of you following my blog. It’s a very important project and I invite your feedback and comments. Find more information about Patients Canada on our website.

It’s time to bring together a few small changes that would have a big impact on the patient’s hospital experience with the idea that these changes would be clear indications that hospitals are indeed becoming more patient and family-centred. I have spoken of them individually, but now it’s time to bring a few of them together and explain how they are derived from our experiences with healthcare.

I was talking with someone who wanted to know more about bringing back dignity to the hospital gown and I mentioned that there were other examples of Key Performance Targets (KPTs) derived from experience.

“For example,” I said, “parking costs can be really burdensome for some people.” I was about to go on when she interrupted me.

“Oh, when my husband had a stroke, I was paying more than $75 a day in parking as I visited him in the morning, afternoon and evening for more than two hours. There were no in and out privileges for visitors. It was awful, but I felt I had no choice.”

I elicited similar responses whenever I went on to explain the various targets together. It seems that they are high on the list of changes that many patients want to see improved. Listing them together often elicits clear recognition of things that niggle but are rarely expressed.

The list of obvious but relatively unnoticed performance targets that will improve patient and family experience includes

  1. A change in the policies surrounding hospital gowns
  2. The reduction or elimination of parking fees for visitors and families of patients
  3. That there is a chair in the triage position in Emergency Departments for a family member or friend who accompanies the patient
  4. That hospitals adopt an open visiting policy so that friends and family members can visit patients any time
  5. That all hospital notes are readily available to patients (and whenever possible, their families) so that they can review them at will
  6. That food policies in hospital are open to allow and even enable family and friends to bring food from home to patients, by, for example, having a patient and family accessible refrigerator and microwave oven on every hospital unit

These six changes in policy and practice would go a long way to making hospitals more patient and family friendly. We encourage hospitals to adopt them.

Process for developing Key Performance Targets (KPTs), developed by Patients Canada.

A solution to hospital gowns

In many discussions about patient experiences in healthcare there are allusions to the loss of dignity that many patients experience when they enter the hospital. Often patients who value their privacy are subjected to extraordinary intrusions which would be intolerable in any other circumstance. Often, because it is such an ordinary part of the hospital experience, we do not see the indignities that occur as a matter of course. The most glaring of these is the hospital gown. Patients’ bodies are only partly covered by a gown that seems to be a mandatory requirement in hospitals almost everywhere. We have forgotten the reasons for it, but assume that gowns are designed to allow doctors and nurses easy access to the patient’s body.

hospital gowns 1It first occurred to me that this was a privacy issue which is not covered by the current privacy regulations, as it’s currently fixed on keeping medical records away from prying eyes. Many patients believe that at least the same amount of attention that’s paid to safeguarding medical records should be paid to keeping their bodies private. I believe that this is yet another hangover from the early days of scientific medicine when patients gave their bodies over to science once they entered the hospital. This is clearly privacy issue of significance to patients.

Last week journalist Tom Blackwell of the National Post wrote a long and varied feature on the issue and interviewed not only physicians, but also patients and representatives from Patients Canada. The article pointed out that the vast majority of patients had no medical need to be so accessible to doctors or nurses, and it was even suggested that the gowns contributed to health deterioration that led to increased returns to hospital.

A few days later I received an email from a friend in England who found the article and presented a solution that is being tried in some parts of the NHS: the Dignity Giving Suit. She has allowed me to use images from the site to show a few of the alternatives. She also included her response to the article:

We have designed the innovative patented Dignity Giving Suit which affords patient’s dignity, whilst allowing surgical and medical teams full dignified access to the patient for procedures, lines, leads, drips, drains and catheters. Patients have access to the Dignity Giving Suit to enable them to purchase a version of the hospital Dignity Giving Suit, in a choice of patterns which allow them to feel comfortable and in control in their own choice of ‘pajama’. Their own version of the Dignity Giving Suit can be worn in all departments of the Hospital, including MRI and Xray until they require the Hospital’s sterile version, and for recuperation at home. The Hospital version has been in some Hospitals in the UK for over a year with more hospitals currently trialling or ordering.

According to the site, these hospital suits allow patients to retain their dignity while “giving healthcare practitioners unrestricted access to their patients”. What we need now is a philanthropist who can restore the dignity of patients and help create the next major change in healthcare.

Alternatives to the traditional hospital gown

An update on patient partnerships

Last week we gave out the Patients’ Choice Awards in Sarnia for the fourth time. This is a pretty good time to take stock. How has the Canadian healthcare environment changed since Patients Canada was founded in 2011? Perhaps the most critical thing to say is that the fear that patient partnerships are the flavor of the month seems to be diminishing; it looks like the movement to bring patients as partners in healthcare is growing stronger every month. Canadian patients are involved in many different ways. Critical healthcare organizations have taken patient partnerships on in a systematic way. Here are a few of the changes that we have experienced since we began.

Our very first activity as a patient group was to join a standing committee of a hospital that had spent some years implementing Patient -Centred Care. We were the first patient members. We were soon asked to join a research group to develop a program for housebound diabetics. At the meeting, it emerged that our role was to approve of their draft program so that it could be submitted with patient approval. At that time no one knew what patient-centred care really was and some groups had spent years defining its terms.

We decided very early on that we would not worry about the definition. Instead we would immerse ourselves in patients’ experiences and work in collaboration with the system. Our goal was to create and sustain patient partnerships in healthcare. Our first project was developed in cooperation with the Ontario Medical Association. The idea was that patients would write letters of nomination for doctors who were especially patient-friendly. The winners of these Patients’ Choice Awards would be selected by an all-patient jury and a certificate would be given to the winning doctor signed by the Presidents of our two organizations. Since then, we have given out over 30 plaques to doctors across Ontario with the support of the OMA.

This project was critical to our understanding of our role. It was a collaborative effort and it was based on the experiences that people had with the healthcare system. All our work since then has had these same two elements.

Our most recent project is the development and application of Key Performance Targets (KPTs). I have described some of them in the last few weeks and will present more in the coming weeks. The KPTs are all based on actual experiences that patients have had. They are developed by a panel of patients and health professionals, researchers and managers. They have been instrumental in the contributions we make with our healthcare partners. Last year we joined with the Canadian Institutes for Health Research’s effort to develop patient partnerships in research. We are partners in a five-year project in which researchers will work ever more closely with patients to devise and carry on health research. More recently we became part of an American-funded grant from the Patient-Centred Outcomes Research Institute – an organization with $3 Billion to engage in research with patient partners.

Just last week we worked with other patients and patient groups to revise and strengthen Accreditation Canada’s next iteration of a far more patient-centred accreditation process for Canadian hospitals and healthcare organizations. We also provided a training session for patients and providers to help everyone see the value of the patient perspective. All our contributions are based on our growing collection of patient experiences. The changes that are derived from them will not go away so easily. It looks like patient partnerships are here to stay.

Next week: more KPTs.