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 19^th 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.

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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.

Four Key Performance Targets (KPTs) for eHealth

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.

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eHealth has changed considerably over the last year. Patients now have apps that allow us to monitor our heart rates, photograph the inside of our ears, even perform an electrocardiogram using our mobile phones. These technological breakthroughs are enthralling and no doubt will begin to transform healthcare in the future.

But in a far more prosaic way, we see the beginnings of what and how we want out of eHealth. Canada Health Infoway is helping family practices adopt ways to book appointments online. Yesterday Infoway announced the second wave of registration for this initiative: they will provide financial support to practices that introduce e-booking. After the first wave more than 700,000 Canadians can book appointments online. To see examples of e-booking initiatives presently underway across Canada, click here, or read the latest benefits evaluation report on e-booking.

Having the ability to schedule an appointment online is a good example of a Key Performance Target (KPT) for primary care. It marks the launch of widespread electronic communications between patients and our doctors’ offices. When it becomes widespread it will bring Canada closer to the international level of electronic interaction between patients and their doctors.

Through patient surveys we have identified some simple things that patients want as targets in primary care.

Key Performance Target 1: We want to be able to make appointments online

Key Performance Target 2: We want to be able to access test results online

Key Performance Target 3. We want to be able to renew prescriptions online

Key Performance Target 4: We want to be able to communicate with our doctors online

Canada remains among the worst of the developed countries to have these four capacities for patients. Whenever I speak to information technology groups I ask if anyone has their doctor’s email address. So far very few people speak up, if any. Some people can get test results online through MyChart. And the fax machine remains a necessity almost everywhere for renewing prescriptions. But now we have the hopeful sign that in a growing number of practices appointments can be made online.

1. Making appointments online will begin to spread now as doctors recognize the freedom it gives their administrative staff to do other things.
2. As patients we can take the lead in expecting that electronic communications should increase. As electronic medical records become more pervasive our family doctors should be able to share test results with us online. In fact, there is a growing movement of creating ‘shared notes’: some doctors are partnering with patients to prepare the notes for each visit and then preparing a copy for them to take home.
3. There are already no serious technical obstacles to renewing prescriptions online. It has just not been agreed to overcome them. In fact, most of the major pharmacies already allow access to patients prescription history across their entire network. The step to easy prescription renewal is modest.
4. A small but growing number of Canadian doctors are beginning to circulate their email addresses to patients and are setting up ways for their patients to reach them more easily. Those who have done so have found that patients really appreciate this increased access and the doctors do not find the effort burdensome. In fact, for most it makes their lives significantly easier: It can avert unnecessary visits and more time can be allocated to patients who need more face-to-face time.

We are hopeful that these four performance targets are widely achieved. We look forward to next year’s measurement.

A Canada day celebration of Canadian health policy

For the last few weeks I have been writing about health policy in Canada from the patient’s perspective and Paradigm Freeze, a new and interesting book that has a narrow view of the Canadian health care system and hence a somewhat limited view of what constitutes health policy. The selection of policy topics it studies leaves out the most significant policy document in the history of Canada, and one which has had a continuing impact on how Canadians perceive health and healthcare. It is, of course, the Lalonde Report.

The week of Canada Day seems to be a good time to speak about the Lalonde report, A New Perspective on the Health of Canadians. That we no longer think of health as a product of medical science, but rather as a consequence of a complex array of determinants, is in no small measure due to the Lalonde report. Its publication marked a rather rapid paradigm shift around the world concerning the nature of health and health policy. Soon after the report was issued an international movement began to think about health policy in terms of health promotion and overall health status. This resulted in international declarations like the Ottawa Charter for Health Promotion in 1986.

The Lalonde report is named for the then Minister of Health and Welfare, Marc Lalonde, but it was actually written under the leadership of Hubert (Bert) Laframboise, an Assistant Deputy Minister in the Federal Department of Health and Welfare, where he created a “free-wheeling think tank” with which to inform government policy discussions.

The ideas of Thomas McKeown about health and health policy formed the core of this new approach. In the UK the National Health Service (NHS) had been created with the belief that a universally funded health care system would improve the health of the population and eventually reduce the demand for health care. This hope was never realized, and perhaps it never could have met that goal. In this context McKeown’s central idea was that one had to go beyond standard medical services to improve the health of the population. Indeed McKeown’s arguments were a polemic against the view that medical care was a major contributor to improving the health of a population. He argued that the medicine of the day had mistakenly reduced the concept of health to a mechanistic explanation of the state of the human organism.

The approach to biology and medicine established during the seventeenth century was an engineering one based on a physical model.  Nature was conceived in mechanistic terms, which led in biology to the idea that a living organism could be regarded as a machine which might be taken apart and reassembled if its structure and function were fully understood. In medicine the same concept led further to the belief that an understanding of disease processes and of the body’s response to them would make it possible to intervene therapeutically, mainly by physical (surgical), chemical, or electrical methods.

For McKeown,  “the major contributions to improvement in health in England and Wales were from limitations of family size (a behavioural change), increase in food supplies and a healthier physical environment (environmental influences), and specific preventive and therapeutic measures.”

The Lalonde report identifies four major influences on health and speaks of them as constituting the “health field”. The table below describes the four quadrants of the health field.

Here are some examples of policies that have increased Canadians participation in their own health

There is no question that the Lalonde report marked a paradigm shift in Canadians’ sense of responsibility for their health, however I am offering only a few examples of major change and looking at only one of the quadrants. (For a more complete account please look at Towards A New Perspective on Health Policy)

Exercise

At the time of the Lalonde report moderate exercise meant going to the gym three times a month. After its publication and the introduction of policies and programs that encouraged fitness training, like ParticipACTION, moderate exercise means going to the gym at least three times a week.

Nutrition

In 1974, Canadians ate red meat and few green vegetables. The Canada Food Guide had been dormant since 1961. A new Food Guide emerged in 1977 soon after the Lalonde report. It recommended less red meat and more fruits and green vegetables. Since then Canadians have significantly changed their eating habits for the better.

The Canadian Organic Growers organization was founded in 1975 immediately after the Lalonde report was published. At the time organic foods were sold in the back part of a very few health food stores, but now regulated organic food is now sold in every major supermarket in Canada.

Smoking

At the time of the Lalonde report 46.7% of adults in Canada smoked cigarettes. That number in 2013 was 19.3% proving that policies to reduce smoking have had a strong impact on smoking reduction. According to The Emperor of All Maladies: A Biography of Cancer, smoking reduction campaigns have had a far greater impact on cancer reduction than all the billions of dollars spent on cancer research.

These three sets of policies have had a major contribution to the changing mortality and morbidity rates in Canada. We no longer die in our 60s of heart attacks, of lung cancer and strokes. We live longer and are prone to longer chronic conditions. This is largely due to the paradigm shift that happened after the publication of the Lalonde report, something that I think is worth celebrating on Canada Day.

 

Typhoid Mary

Not all famous patients are passive and receptive. Typhoid Mary, whose real name was Mary Mallon, has been described as everything from an ignorant carrier of disease to a malevolent murderer of hundreds of people. In 1906 she appeared to be a perfectly healthy woman who had taken a job as a cook for a well-off family that was vacationing in a rental house in Oyster Bay, Long Island. Within weeks, six members of the household contracted typhoid fever, including not only several family members, but also the gardener and several maids. Mary Mallon stopped working there within weeks of the typhoid outbreak.

The owner was worried that his house would no longer be rentable and hired investigators to determine the cause of the outbreak. None were successful until he found George Soper, a civil engineer, who had experience in tracking typhoid outbreaks. Soper thought that Mary Mallon might be responsible and began to investigate where she had worked before. He discovered that typhoid outbreaks had followed her as she changed jobs between 1900 and 1906. One young girl had died of the disease.

Soper finally found Mary Mallon in March of 1907. She was once more working as a cook. When he tried to approach her to see if she was infected with the typhoid bacteria, she reacted violently. He called in the Public Health Department and she, once again, refused to listen to their explanations and rejected their requests for samples of her blood, stool and urine. In the end, they called in the police to capture her by force. They brought her in an ambulance to a hospital in New York where samples were taken and her stool tested positive for Typhoid bacilli. Because she was a public health hazard, she could be removed from her home and placed in isolation without trial. She was brought to North Brother Island (in the East River off Manhattan) and kept in a secluded cottage which at the time was owned by Riverside Hospital. The Island has since been abandoned and the buildings on it are derelict.

Mary Mallon became famous as Typhoid Mary during this period. She sued the Public Health Department for her release, claiming that she was healthy and that they had no right to detain her without trial. She sent her stool sample to a private laboratory that found no typhoid bacteria in it.

However the Public Health Department tests disagreed and her suit was dismissed in court. She remained on North Brother Island for two years.

According to the laws of New York State, the Public Health Department had the right to isolate the cause of infectious diseases like typhoid fever:

The board of health shall use all reasonable means for ascertaining the existence and cause of disease or peril to life or health, and for averting the same, throughout the city. [Section 1169] Said board may remove or cause to be removed to [a] proper place to be by it designated, any person sick with any contagious, pestilential or infectious disease; shall have exclusive charge and control of the hospitals for the treatment of such cases. [Section 1170] (Leavitt 71)

In 1910, a new Director of Public Health offered to release Mary Mallon from her confinement if she would agree not to work as a cook and to take precautions when she was in contact with other people so as not to infect them. She agreed and was released. She found work as a laundress and soon disappeared once more.

It is not clear that Typhoid Mary understood that she was a healthy carrier of a deadly disease. She was an Irish immigrant who lived and worked in the service class and it was more common to give orders to people like her, than to attempt to explain things. It is also not clear that she tried to abide by the conditions set for her release. Working as a laundress or a maid paid substantially less than working as a cook, and after several service jobs, she returned to her original occupation and began to work as a cook again. In January 1915, twenty-five people contracted typhoid fever at the Sloane Maternity Hospital in Manhattan and two people died. It turned out that Mary Mallon had changed her name and was working as a cook in that hospital.

This time there was no public sympathy for her and she was returned to North Brother Island where she lived for the rest of her life until she died in 1938. Some estimates are that as many as several hundred people died because they were infected by her, but there remains no clear agreement about whether she understood that she was infecting and killing them.

Leavitt, J.W. Typhoid Mary: Captive to the Public’s Health. Boston, Massachusetts:  Beacon Press, 1996.

Technology helps patients assume a more comprehensive role in medical care

Over the last six months, there has been an extraordinary change in the role of patients in health care and we can hardly keep up. As little as six months ago, the question was, “How can we help patients gain a voice in health care?” We knew that patients should have a voice and that some organizations were beginning to introduce policies and committees to welcome that voice, but what has happened since has far exceeded our expectations.

In the New York Times on April 25, 2014, there was an article that described several devices that empower patients and families to be more involved in their primary care. There are now attachments and apps for smartphones that teach parents how to examine their children for earaches and determine by themselves, or with the online aid of their doctor, whether a visit to the doctor’s office is necessary. We already know that the cameras on some phones have become so sharp and clear that photographs of skin conditions can now be diagnosed by dermatologists online without any fancier technology. Now with the otoscope attachment and app, one can create photographs and even videos of the inner ear to check for inflammation. An otoscope is the tool that doctors use to examine the inside of your ear. The picture to the left is of the Cellscope Oto that is attached to an iPhone. Its app will allow almost anyone to examine the inner ear.

This visual otoscope is beginning to be used by doctors to help parents (and medical students) learn which conditions require medical intervention and which do not.

The AliveCor is another recent device/app that allows your smartphone to monitor your heart and interpret the electrocardiogram (ECG). It can also send the ECG to your doctor. It used to be available only by prescription, but can now be purchased online for $199.

As these devices and others like them become more sophisticated and better able to interpret results, they will have a profound effect on the practice of medicine. There is already a website where your photograph can be assessed by a dermatologist for a fee. In the future there will be apps that will be able to crunch the data and do that assessment themselves.

The New York Times notes that this is a continuation of the trend for patients and their families to participate more actively in their own care. Apps are no longer merely ways of communicating with the doctor who has the necessary knowledge and skills to make the diagnosis and prescribe the treatment. Now these tools will enable patients and their families to diagnose the condition and decide by themselves if a trip to the doctor is necessary.

In Ontario, there has been quite a lot of leading edge communications technology to allow doctors to examine patients at a distance. Because of the huge size of the province there are enormous remote areas where there is no easy access to specialists (and other health practitioners). The use of high definition television and tools like the remote otoscope, have allowed doctors to examine and treat patients at a distance for a wide variety of conditions – everything from eye examinations to cancer treatment follow-ups have been done through the Ontario Telemedicine Network (OTN). In fact it has been a leader in medical care among countries with large remote populations. Some of its technology is already beginning to become cheaper and more widely available through smartphones.

At a meeting on April 21, 2014, with a representative of OTN, Patients Canada explored ways to use their technology to increase services not only for remote communities but for populations that find it difficult to travel in rural and even urban communities. Many housebound patients and their families have difficulty receiving services. This new technology can become a way of getting more services, improving continuity of care, and creating stronger partnerships between patients, family members and practitioners. At Patients Canada we have recognized that far more care in the community is needed not only for housebound patients, but for others who have some difficulty accessing the health system. It may be that these new technologies can help to change that by improving communications and enabling patients and families to take on more of the diagnostic role themselves.

Famous patients: Henrietta Lacks

Henrietta Lacks is perhaps the most widely distributed patient in the history of the world. Her cancerous cells are everywhere – more than 50 metric tonnes of them have been grown in laboratories around the world and some have even been sent into space. In contrast to Eve, she has actually gained a kind of immortality.

Henrietta Lacks had cancer in 1951 and the malignant cells from her biopsy were so robust that they could be grown in laboratories. Because of this, her cells were used as laboratory material for the study of virology and they were cultured and distributed widely. No one asked her permission or even told her or her family about what they had done. Her cells thrived while she died of cancer within eight months of diagnosis. The cells, called “HeLa cells,” have been the basis of research for more than 62 years.

The world has changed. At the time of her death, the cells were so widely known that a lab assistant at her autopsy was surprised that the cells actually belonged to a real person. But it remained that no effort was made to inform her family about these still living cells until a couple decades later. Henrietta Lacks was a black woman who was being cared for as a third class patient at Johns Hopkins, a major teaching hospital. Patients like her were given excellent care but at the same time, were seen as clinical material for scientific research. It was largely assumed that there was tacit agreement by patients to accept their research role, at least partly in exchange for their care. In those circumstances, patients played almost no role in making decisions about their care or about the use of materials taken from their bodies.

In 1973, Henrietta Lacks’ family was told about the use of her cells, not because anyone thought they had a right to the information but because geneticists wanted some cells from her living relatives to do more research. Her family had to assimilate this pretty significant fact about their mother. Of course, there was nothing that could be done to curtail the distribution of HeLa cells, nor is it clear that anyone wanted to. But her family had quite strong feelings about being exploited by the healthcare system and remained suspicious of contact with it. Some members of her family wanted more information about what had happened to her cells, others wanted some compensation but they were largely ignored.

In the early 21^st century, a graduate student named Rebecca Skloot became interested in the origin of the HeLa cells and contacted the family. Despite their initial reluctance, she gained their confidence over time. In 2010, she published The Immortal Life of Henrietta Lacks to introduce readers to the living person who generated the cells, and to provide an overview of the political and scientific context in which she lived and died. It is an excellent account that covers everything from the scientific significance of her cells, to a description of her family circumstances and the care she received during her illness and death.

By March of 2013, there were more than 74,000 studies using HeLa cells. Many of them are important contributors to cell biology, the development of new vaccines, and of course, cancer studies. A recent study by scientists at the European Biology Laboratory sequenced the genome of the HeLa cells. In order to complete the studies they needed cells of living members of the family, which they were given. When the results of the study were publicly posted on the internet, the Lacks family complained to the National Institutes of Health that this was an intrusion into their privacy and an agreement was reached to restrict access to the results of this and other similar studies. But there was no agreement to give the Lacks family any benefit from the commercial products developed from research on the HeLa genome.

To give you an idea of what they have not received, the legatees of A.A. Milne (1882-1956) continued receiving royalties from Winnie the Pooh, though originally copyright was meant to expire 50 years after his death. On March 4, 2001, Walt Disney paid an estimated $340-350 million for rights to the Milne royalty stream. Theoretically, the copyright (as extended) will run out in 2026, but Disney has been very adept at extending copyright protection. It emerges that as Mickey Mouse ages, the rights to his persona remain in the hands only of Disney and whenever there is an end in sight, the copyright is extended. Sometimes the often changed Copyright Extension Act is called the Mickey Mouse Act. According to the American Constitution, copyright cannot be extended forever, but it has been suggested that it will be extended for “Forever Less a Day.” One would imagine that the commercial consequences of the HeLa cell are not dissimilar in scale. Patients continue to be a free good unlike Mickey Mouse.

Eve: the first patient

Just as there is so far no history of medicine from the patients’ perspective, we have so far not compiled a list of patients who should stand in the Patients Hall of Fame.

Let’s take a break and look at some historical figures who had important experiences of illness or pain, and think about how they have contributed to our understanding of health. Just as there are famous names in the history of doctors and nurses, we might want to compile a list of patients who contributed to our understanding of health and illness. So far there is no Google list of Famous Patients and we might want to begin to compile one. There is little doubt in our mind that patients have made significant contributions to history.

Eve is the first person to come to mind. We understand that while in the Garden of Eden, Adam and Eve did little work. They were never hungry, but more than that, they were never sick and they felt little pain from what I can gather. The Garden of Eden was the quintessential idyllic place. In it, Adam and Eve were healthy. Not only did they not have any diseases, but our sense is that they were in “a complete state of wellbeing.” This is close to the definition of health offered by the World Health Organization: “Health is a state of complete physical, mental and social wellbeing and not merely the absence of disease.” Admirers and detractors of that definition of health have often called it an “Edenic” definition.

I often ask audiences, “how many of you are in a state of complete physical, mental and social wellbeing?” Occasionally someone admits to it, but mostly no one does. So for the WHO, health is something we strive for but rarely attain. Interestingly, sometimes the person who says that he or she is in a complete state of wellbeing also has a chronic condition, but is feeling particularly healthy that day. People with chronic conditions such as diabetes can feel perfectly healthy. Health from a patient’s point of view can very much depend on context.

Hieronymus Bosch: The Garden of Eden

As for Eve, she only became a patient when she and Adam left the Garden of Eden. God punished Adam by making him work hard for his everyday food. His punishment for Eve was to make her suffer the extreme pain of childbirth.

Eve became the first sufferer and a patient is a person who suffers first of all. And she suffered the pain of childbirth without the help of doctors or midwives.

That etymological definition of a patient is tied to a notion of being at the receiving end of things. But although it is clear that patients are people who are not healthy in the WHO sense, there is no need to declare them to be passive. In Patients Canada, we don’t struggle with the term “patient,” we embrace it and broaden it to include family caregivers and others who are close to the patient. We believe that patients and those close to them might suffer, but they can also be active partners not only in their own healthcare, but in all aspects of the system of care – in the co-design of services and in the development of policies.