A Patient`s History of Medicine

In most histories of medicine doctors are the heroes. Patients are rarely mentioned by name unless they are famous in their own right, and even then they are almost always presented as grateful (and passive) recipients of medical and nursing care. Our perspective as patients is rarely described, unless it is about our gratitude for the heroic work of the doctor and how the doctor has overcome our fear of treatment and eradicated the terrible symptoms we exhibit. We are rarely seen as active partners in our care and certainly not as contributors to the advancement of medicine or the rest of healthcare. The same or similar treatment of patients appears in almost all histories of other health professions like nursing and pharmacy where there are often vigorous complaints about how their profession is ignored in medical histories. While it is worthwhile to celebrate extraordinary scientific discoveries and the healthcare professionals who achieve them, it may be useful to point out the critical role that we as patients and families have played in the development of modern healthcare. Ignoring our perspective is to lose the great richness of our contributions in the past, our growing participation in the present and the need for our partnership in the future.

No one has so far written a history of medicine from our point of view. Yet we as patients have always been the object of concern and care. What does the history look like from our perspective? Have we really been as passive as the term “patient” implies? How has the view of patients changed over time? Who is a patient? Has this supposed passivity helped us? Has it harmed us? Where and how have we been active participants? Where have we led advances in healthcare? Who have been some notable patients in the past? What have they accomplished? The blogs will explore these issues and more. We will try to shrink this large gap in the history of healthcare and medicine.

As sick people we have often had a role in our own care. Most of us manage our own minor ailments. We often get support from our families and at times we find help in unlikely places outside the formal healthcare system. It is not surprising that a record of these aspects of health care have been neglected in the face of the enormous success of professional medicine. The truth is that as well as family and friends, there has always been a multiplicity of health care providers, and that the virtual monopoly of professional medicine is a relatively recent phenomenon.  I will be writing a series of blogs with the view to preparing a book that takes a wider view and looks historically at the roles that we as patients have assumed and the kinds of care that we have chosen (or been subject to) from prehistoric times and what that care has contributed to healthcare today.

When we became so ill that self care was no longer an option, the choice between doctors and other practitioners was at one time a major decision for patients and their families,  but it has had little place in the history of medicine. For medical practitioners all non-doctors were always quacks. But as William Osler pointed out, the real trouble with quacks is that their cures work. Osler was arguing for the professionalization of modern medicine and the removal of even the temptation to go to non-professionals. Despite this we as patients have been drawn to a wide variety of treatment and much of it has worked. This book will consider the successes and failures of the choices we make for care and how that has affected the history of medicine. We will also think about the search for magical cures and silver bullets that has always been, and continues to be, part of the patient environment.

Finally many patients have been sacrificed on the altar of progress in medicine, some willingly, some unwittingly, and some despite their protests. This book will look at the history of patients as clinical material throughout history and the role we continue to play as subjects of study with and without our consent.

I am Back to Blogging

I am back to blogging. My last blog was about learning about a diagnosis of cancer and preparing for the Whipple Procedure – a major surgery that cuts out lots of your insides to make sure that you don’t die of pancreatic cancer. Well, I underwent the procedure and survived it. I no longer have cancer and I’m back to blogging at last.  Still need more time to recover.

In my absence, Patients Canada survived and flourished. I was very grateful for all the help and especially for the way in which some of my very own ideas were effectively used by my colleagues, Alies Maybee, Brian Clark, Emily Nicholas and others to move the organization forward.

This was especially notable in the application of Key Performance Targets to some of their projects. Let me remind you. The basic idea that I have been working on since 2005 is that the actual experiences of patients and family caregivers must be heard and understood in order to make healthcare more patient friendly. In order to do this we have assembled a small group of people, some of whom have worked together since well before Patients Canada was founded in 2011. We meet monthly and review patient experiences in order to identify potential changes.

These continued discussions have enabled us to dig ever more deeply into patient experience and to create lasting partnerships with patients and their families.

Some of the earliest examples were stories about hospital visits. Family members often felt excluded by hospital staff who wanted to only talk to the patients themselves (often to “preserve confidentiality of the doctor patient relationship.”) In one outstanding case mother with advanced dementia, who could no longer boil water safely or dress herself, insisted that all was well. She was interviewed by a young psychiatrist who did not let her daughter/caregiver into the room. The psychiatrist was surprised at how well the patient was, while the excluded daughter was in tears of enraged grief because her mother’s situation was not properly presented or assessed. Her own distress and her mother’s real condition were entirely ignored.

This exclusion of family members often occurs in more subtle ways. In emergency departments the triage position is often a tiny space with two chairs: one for the triage nurse and one for the patient. Even though family caregivers who accompany the patient may have very useful information about the patient’s condition and previous treatment, there may be no physical space for them – no room to listen to what they can contribute.

After several years of discussion, during which we noted the tendency to leave out anyone but the individual patient, we decided that a simple and easily measurable intervention might make the biggest difference. How many of you have had the experience of going to an emergency department with a family member and to find yourself in the triage area but with no place to sit?

Hence was born the idea of the “third chair in the triage position” for family caregivers. When we presented this as a key performance target to patients and families, they immediately recognized its relevance. Some laughed with pleasure and suggested that they would be happy to donate the chair to hospitals that would accept it. From this very clear example we developed more Key Performance Targets which I will describe in future blogs.

Cancer appears

Over the last month or so, I have been feeling a bit sick. My appetite went and I noticed changes in my urine and bowel movements. And so I went to my GP for some tests and discovered that my liver was not working properly. She sent me for an ultrasound where they found a stone in my bile duct that was causing my liver to malfunction. She scheduled an endoscopic procedure that would remove the stone. The hope was that that would be the end of it, but it was not. The endoscope showed that there was indeed a blockage but no stone was found and the biopsy of a scraping showed the presence of malignant cells. The upshot of all this is that I am being scheduled for a major surgery called the Whipple Procedure which will hopefully rid me of cancer and allow me to recover my health.

This was a totally unexpected turn of events, and it comes just when we are turning the corner at Patients Canada: we are in the midst of preparing for our first benefit concert; we are becoming more actively engaged in the Ontario Strategy for Patient-Oriented Research (SPOR) grant; and there are many requests for our help with a wide variety of projects in other organizations.  And of course, there is never a good time for major illness in one’s personal life.

Luckily we have a group of very dedicated volunteers at Patients Canada who have pitched in and taken over many of my obligations. We also have a strong Board that can continue to oversee our projects and other activities.  From a personal standpoint, many close friends and extended family are extremely supportive, and will be there for me and my family.

I am preparing myself for major surgery by trying to stay as fit as I can and making sure that I understand what this all entails. Oddly, I am not particularly frightened by the fact that I have cancer and I wonder if that is because I have immersed myself in the experience of so many patients over the last few years. I am sure that the reasons are far more complex and probably much more personal, but the fact is that I seem to feel relatively well-prepared for what will no doubt be a major ordeal full of surprising twists and unpleasant events.

I just want all of my friends and those involved with or interested in Patients Canada to know that I will be away for a while, but that the work will continue in my absence. My wife and I feel the love and support from all of you.

Fanny Burney’s Mastectomy

Fanny Burney was a famous novelist in the late 18th and early 19th century. She married Alexandre d’Arblay, a French aristocrat who had escaped the French revolution. They moved to France in 1802 after Napoleon came to power. Soon after arriving, Fanny developed a terrible pain in her breast that came and went. It returned in 1806 and became unbearable by 1811. Her physician, Antoine Dubois, called in Baron Dominique-Jean Larrey, Napoleon’s surgeon, and they both decided that she needed a mastectomy. This was performed in her home on September 30, 1811. On the day of the surgery, she wrote a farewell letter to her husband. After her recovery, she wrote about her experience to her elder sister Esther Burney in March of 1812 – excerpts from this letter are quoted here.

Fanny Burney

“Frances D’Arblay” by Edward Francisco Burney

No fewer than seven doctors were present for the operation; all were dressed in black. She had been asked to write her consent, but the procedure was not what had been described to her. She was told that it could be performed while she was seated in a chair, but instead they told her to get into her bed and ordered the room cleared of nurses and maids. “Ah, then, how did I think of My Sisters!—not one, at so dreadful an instant, at hand, to protect—adjust—guard me.” Her physician Dubois had “tears in his Eyes.” She described having her faced covered by “a cambric handkerchief” and that “It was transparent, however, and I saw, through it, that the Bedstead was instantly surrounded by the 7 men and my nurse. I refused to be held; but when, Bright through the cambric, I saw the glitter of polished Steel—I closed my Eyes.”

After a moment or two, she opened her eyes, “again through the Cambric, I saw the hand of M. Dubois held up, while his forefinger first described a straight line from top to bottom of the breast, secondly a Cross, and thirdly a circle; intimating that the Whole was to be taken off.” She sat up and protested: the pain was just in one part of the breast, why did they want to remove it all. Dubois pushed her down and she said, “I closed once more my Eyes, relinquishing all watching, all resistance, all interference, and sadly resolute to be wholly resigned.” She described the removal,

When the dreadful steel was plunged into the breast—cutting through veins—arteries—flesh—nerves—I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision—and I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, and the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp and forked poniards, that were tearing the edges of the wound—but when again I felt the instrument—describing a curve—cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose and tire the hand of the operator, who was forced to change from the right to the left—then, indeed, I thought I must have expired.

She’d thought that marked the operation over, however when Dubois and Larrey tried to lift the breast, the tumour stayed attached to the chest wall. She described the shock, “Oh no! presently the terrible cutting was renewed—and worse than ever, to separate the bottom, the foundation of this dreadful gland from the parts to which it adhered.” And you can feel her desperation for it to be over, “Oh Heaven!—I then felt the Knife rackling against the breast bone—scraping it!—This performed, while I yet remained in utterly speechless torture.” And more, “Again began the scraping!—and, after this, Dr Moreau thought he discerned a peccant attom (fragments of diseased [peccant] breast tissue)—and still, and still, M. Dubois demanded attom after attom.”

Of the surgery, she concluded, “The evil was so profound, the case so delicate, and the precautions necessary for preventing a return so numerous, that the operation, including the treatment and the dressing, lasted 20 minutes! a time, for sufferings so acute, that was hardly supportable.” She described seeing her surgeon after, “I then saw my good Dr Larry, pale nearly as myself, his face streaked with blood, its expression depicting grief, apprehension, and almost horrour.”

Fanny Burney survived and died at 88 in 1840.

Burney F. Account from Paris of a terrible operation—1812 [letter to Esther Burney]. Henry W. and Albert A. Berg Collection. 22 March 1812. New York Public Library, New York. Online at the New Jacksonian Blog. Accessed 23 Nov 2014. http://newjacksonianblog.blogspot.ca/2010/12/breast-cancer-in-1811-Mme d’Arblay-burneys.html.

Burney, Edward F. Frances D’Arblay (‘Fanny Burney’). Digital image. National Portrait Gallery. National Portrait Gallery, n.d. Web. 23 Nov. 2014.

Thresholds and wait times

I have been thinking quite a lot recently about thresholds for health care intervention. In health care, if there is a scarcity of a resource, then the threshold for intervention typically goes up and if there is an excess of a resource, the threshold of intervening goes down.

Let’s take an example; If you have an illness that responds well to antibiotics and you go to a very busy physician, she will say, “Take a full course of the antibiotic and you will be OK. “If she is not so busy, she might say, “Take the antibiotics and book an appointment in two weeks.”

Both are equally good responses but apportion the doctor’s time differently.

Because health care tends to be supply driven, when the supply goes up it always gets used, but with a lower threshold of use.

A second important idea in health care is coming to understand the consequences of a shift in population morbidity from acute infectious disease to long term chronic conditions. If someone has an acute infections disease there is usually a very clear test to see if the disease is present and a very clear protocol for responding to it. However in the case of chronic conditions the measures are often less clear and individual patients can respond differently to medical treatment.

A good example of this change is the identification of diabetes or hypertension in a patient. Here there are lots of borderline cases and a variety of responses are possible. Pharmaceutical companies have been very aware of this change and have found ways to bring medications to the supply system for lower and lower thresholds. There are now drugs available for pre-diabetic conditions, for earlier and earlier indications of possible heart disease and so on.

If we take these two ideas together then we can find new ways of thinking about waiting lists.

When waiting lists were very long in the UK, I met a doctor, while I was working there, who confided in me that when he had a patient who wanted her varicose veins stripped, he would say, “Of course. I will put you on the waiting list.” This meant to him that she would never have the procedure because the list was so long and she was at the bottom of it. This would save him from having to spend time explaining to her why he thought that the procedure would do no good aesthetically and why it was not necessary for health reasons.

Waiting lists are often managed by managing the threshold for intervention. If there was an acute problem then people would jump the queue. A study by colleagues at the King’s Fund showed that acutely ill patients had very short waits for surgical procedures. It would be interesting to see how much that has changed since then.

We have also learned that because of the change in our understanding of cancer, “watch and wait” is a good way to respond to many early detections of cancer. That is very hard for us to take, since we have been raised to think that every last bit of cancer must be eradicated form your body or else you will die. It is worth wondering how much some of these lists are part of this watch and wait way of thinking.

A Five-year Plan for the NHS

Several weeks ago, Simon Stevens who is head of the English National Health Service (NHS), published Five Year Forward View. The report details his plan for the NHS, and it’s well worth a read because it is remarkably relevant to the Canadian context.

He describes a context that is quite similar to ours: an aging population with multimorbidity as the major epidemiological feature. The excellent hospital sector and well-developed primary care network of general practitioners is not adequate or entirely appropriate for the population served by the NHS.

He recognizes that there must be a “radical upgrade in prevention and public health”  (NHS 9). The failure to do this in the last decade has resulted in “a sharply rising burden of avoidable illness” (NHS 3). In Canada, the weakness of public health initiatives has been marked by similar increases in obesity, diabetes and other preventable conditions.

Secondly, he sees that patients must “gain far greater control of their own care – including the option of shared budgets combining health and social care. The 1.4 million full time unpaid carers in England will get new support, and the NHS will become a better partner with voluntary organisations and local communities” (NHS 3).

This is clearly what must happen in Canada too, but there are few policymakers here who have such thoughts because of the severe limitations on the boundaries of our healthcare system. The relationship between the system and voluntary organizations is pretty sparse, and the idea of giving patients and caregivers control over any funds for their care is certainly not top of mind. It is time to include patients and family caregivers in discussions about their perceived needs and consider new ways of providing funds to meet them.

Thirdly, the document argues that:

The NHS will take decisive steps to break down the barriers in how care is provided between family doctors and hospitals, between physical and mental health, between health and social care. The future will see far more care delivered locally but with some services in specialist centres, organised to support people with multiple health conditions, not just single diseases. (NHS 3)

Importantly, he does not plan any structural changes in the NHS. Reforms will not involve changing the governance or boundaries of the many organizations that make up the NHS. It will include strengthening primary care, integrating access to a wide variety of services that will avert unnecessary hospital visits, and increasing the already abundant community services (which are notably sparse in Canada).

We recommend that policymakers take a good look at the document and consider how it might be applied in the Canadian context.

 

National Health Service. Five Year Forward Review. England: National Health Service, 2014. Web.

Canada’s Healthcare System Today: A Need for Change

About 40 or 50 years ago, Canada’s healthcare system was pretty good. These days it is no longer addressing the needs of Canadians so well. It still provides proper care for people with acute illnesses by way of excellent surgeons, well-trained specialists, and an increasing number of family practice professionals. But by and large, it is not very good at dealing with the four main causes of mortality today – cancer, heart disease, lung disease and diabetes, and the population that is most affected by them, those 65 and over.

One of the great successes of the modern era has been the dramatic increase in life expectancy. People in the developed world lived for an average of 35 to 40 years in 1850 (Reynolds). People born in Canada today can expect to live for more than 80 years (Statistics Canada). This increase is typically common knowledge.

What is less widely known is that the increase in longevity also brought with it an increase in healthy years lived. As late as the 19th century, most people over 40 suffered from one chronic condition or another. Many of these conditions were primarily the result of the infectious disease that they survived as children or young adults. Today, chronic conditions affect most people over the age of 65. So we can describe the improvement from 1850 to now by saying that we have an added 25 years of disease-free life. Of those over 65, 89% have been diagnosed with at least one chronic condition. And in fact, 25% between 65 and 79 years old report having four or more chronic conditions (Public Health Agency of Canada).

The causes of chronic diseases today are different from those of 1850: they tend to occur as a result of lifestyle, environmental or genetic factors, rather than earlier infectious disease. Also, chronic conditions tend to be diagnosed at an earlier stage. When medicare was introduced in Canada in the 1950s and 1960s, chronic conditions often manifested in their acute phase – heart disease as heart attacks, lung disease as cancer and so on, and they were treated in acute care hospitals. Today we diagnose these conditions far earlier. We can identify early stages of the four main chronic killers and we know that early diagnosis is very effective in slowing the progress of these conditions and even reversing them.

Unfortunately our system is not well-structured to keep people with early stages of chronic disease healthy. We do not provide the health education, systematic support for changes in eating habits, and exercise and lifestyle recommendations that would avert the slow development of these chronic conditions. The result has been a tremendous boon for drug companies. Because we have inadequate support in the community for helping people to deal with pre-diabetic conditions, high cholesterol counts, increased blood pressure or reduced lung capacity, our primary care system relies almost entirely on referrals to specialists and to medication.

The result has been that we have an overmedicated population that spends more than $900 per capita on prescription drugs (Lexchin and Gagnon). Another survey found that 76% of people over the age of 65 had taken a prescribed medication in the last two days (Ramage-Morin). We are second only to the United States in our consumption of prescription drugs.

In my next blog entry, I will describe services that are part of the National Health Service in England that have enabled the UK to keep people with chronic conditions healthier, avert institutional care for a longer time and have significantly less drug consumption.

 

Canada. Government of Canada. Statistics Canada. Life expectancy, at birth and at age 65, by sex and by province and territory. Ottawa: Statistics Canada, 2009. Web. 3 No v 2014.

Canada. Public Health Agency of Canada. The Chief Public Health Officer’s Report on the State of Health in Canada 2010. [Ottawa]: Public Health Agency of Canada, 2010. Public Health Agency of Canada. Web. 3 Nov 2014.

Lexchin, Joel and Gagnon, Marc-André. “CETA and Intellectual Property: The debate over pharmaceutical patents.” http://labs.carleton.ca/canadaeurope/wp-content/uploads/sites/9/CETD-Policy-Brief_CETA-and-pharmaceutical-patents_MG_JL.pdf. Oct 2013. 7 pages. Web. 27 Oct 2014.

Ramage-Morin, Pamela. “Medication use among Senior Canadians.” Component of Statistics Canada Catalogue no. 82-003-XPE . Health Reports 20.1 (2009). Web. 3 Nov 2014.

Reynolds, Neil. “Good news: life’s no longer short.” The Globe and Mail 19 Feb 2010. Web. 3 Nov 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.” http://labs.carleton.ca/canadaeurope/wp-content/uploads/sites/9/CETD-Policy-Brief_CETA-and-pharmaceutical-patents_MG_JL.pdf. 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.