Category Archives: Healthcare Research

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.

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.


Small Changes with Impact: The Third Chair in Triage™

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.

Small changes can improve the experiences that patients and families have with healthcare. We have been talking about things like hospital parking and food as areas that are relatively non-controversial but have room for clear and concrete changes that would significantly impact our experiences as patients or family members. We’ve developed these ideas to act as key performance targets (KPTs) that can be used by healthcare organizations and bodies to help improve their care.

These KPTs were identified by listening to patient experiences for many years and discussing them with a panel of patients, family members, providers and researchers to determine how these experiences could be improved. We’re now excited to announce Patients Canada’s Small Changes with Impact initiative – a set of key performance targets for healthcare, informed by patient and family member experiences with the system.

The first of these ideas sets the tone for what we are doing; it is a small change that has not so far occurred to service providers, has only been implemented in hospitals with a well-developed patient voice, and can be seen as a challenge for change in hospitals that have not yet implemented it.

Over the last few years, we have heard hundreds of stories from patients and families who have visited emergency rooms. From them, we learned that most emergency rooms have two seats in the triage office – one for the patient and one for the triage nurse. Over time, it became obvious that a third chair for a family member would be a tremendous help not only for the patient and the accompanying person (often a family member), but also for the triage nurse who could gain that extra insight when making the decision about what to do next.

The Third Chair in Triage™ is our first key performance target. We have been told by the CEO of the Kingston General Hospital, Leslee Thompson, that the third chair has already been installed in their hospital emergency room. Obviously, their Patient and Family Experience Advisors came to the same conclusion that we did.

Our challenge is not only to hospitals, but also to researchers in emergency medicine, regulatory bodies, accreditation groups and others to respond to this minimal intervention. The hospitals can add the chair and researchers can evaluate the impact. After that, regulatory agencies might adopt it as a requirement for accrediting emergency facilities. We believe that this would be an important step forward in making healthcare services more patient-friendly. What do you think?

Next week I will present more key performance targets.


™:  The Third Chair in Triage is a trademark owned by Patients Canada.

Health policy from the patient perspective: does Canada have universal health care coverage?

The last topic covered in Paradigm Freeze is prescription drug plans. The multiplicity of provincial plans in Canada ranges from complete to very little coverage to serve as a safety net. Here it isn’t necessary to follow the book to make a point from the patient perspective.

In recent years, the World Health Organization (WHO) has made a strong effort to encourage developing countries to provide universal health care coverage to their populations.

Universal coverage (UC), or universal health coverage (UHC), is defined as ensuring that all people can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.

This definition of UC embodies three related objectives:

  • equity in access to health services – those who need the services should get them, not only those who can pay for them;
  • that the quality of health services is good enough to improve the health of those receiving services; and
  • financial-risk protection – ensuring that the cost of using care does not put people at risk of financial hardship.

Universal coverage brings the hope of better health and protection from poverty for hundreds of millions of people – especially those in the most vulnerable situations (WHO).

It is clear from the definition and supporting documents that universal coverage includes not only hospitals and doctors, but also a wide range of health-related services that add to the cost of healthcare: prevention, therapeutic services, costs of access and so on. Prescription drugs are clearly a significant part of universal health coverage.

The Canada Health Act does not provide for universal coverage – out of pocket expenditures on health care has been increasing over the years. One of the consequences of this is that the cost to Canadians has grown significantly over the last few decades. The figure below shows that the burden of this falls mainly on the poorest part of the population who spend close to 6% of their after-tax income on healthcare (Government of Canada). This is largely on prescription drugs.

Figure 1In an investigation by CTV, it was found that the cost of drugs for cancer care is being passed on to patients when they can take these very expensive drugs at home (CTV). Having to provide for these expenses can impoverish patients and their families. This defies one of the main principles of the WHO’s definition of universal coverage. The story of one of our members is not atypical: the surprise at the pharmacy counter that comes when discovering the cost of cancer drugs outside the hospital; the slow realization that those costs will eat up the family’s life savings; the desperate search for other sources of funding; the disappointment with drug coverage by private insurance plans; and the threat of impoverishment because of the lack of proper drug coverage under medicare.

Which other major developed countries do not include prescription drug coverage in their publicly funded health plans? None. Now that the United States has the Affordable Care Act, Canada is alone among major developed countries in not having universal health care coverage.

WHO: What Is Universal Coverage?” WHO. Accessed June 12, 2014.

Government of Canada, Statistics Canada. “Trends in out-of-Pocket Health Care Expenditures in Canada, by Household Income, 1997 to 2009,” April 2, 2014.

“CTV Investigates: The Cost of Cancer Care.” Kitchener. Accessed June 12, 2014.

Policy for patients – waiting list management

Waiting lists are the fifth research topic in Paradigm Freeze. The chapter on Alberta presents the problem by saying that “expenditure reductions undermined capacity of the system to meet increasing demands for services” (Lazar, Lavis and Forest 47). As a result, waiting lists were given special attention at the Federal Provincial Accord on Healthcare in 2003. Increased dollars were lavished on resources and researchers. And ten years of effort should have resolved the problem, or at least brought us into line with other countries. We had no such success. The Alberta report explains:

The initial political response in 1996 was to devote additional public money to alleviate immediate demands for cardiac and joint replacement surgeries. As the decade progressed and long wait times persisted despite the infusion of additional resources politicians and bureaucrats grew to better understand the complex relationship among surgeons, facilities and other health providers such as acute care surgical nurses. By the late 19990s resources were directed to all three of these areas as opposed to the earlier approach of targeting money to pay for operating room time only (Lazar, Lavis and Forest 48).

The infusion of money was accompanied by the research community’s relatively unsuccessful efforts to gain access to full waiting list numbers. This is described with perhaps the most mouth-twisting coded language in all of the policy literature:

To address the specific issue of wait times, Alberta introduced a voluntary, publicly accessible Internet-based wait list registry in 2003. The choice of a voluntary registry reflected the interplay of three factors: preference for personal responsibility and choice; and recognition of the original bargain with organized medicine with its primary focus on professional autonomy (Lazar, Lavis and Forest 48).

In short, the doctors would not give up their closely held waiting lists and it was up to the general public to take responsibility for the choices they made without adequate information because the internet did not and could not provide accurate waiting times.

Kenneth Arrow who was the father of health economics said that unlike the usual law of supply and demand, in healthcare supply drives demand: the more health care that is supplied, the greater the demand for it. Here is an excellent example of the application of what we might call Arrow’s Law: the more resources that were thrown at the problem of long waiting lists for elective surgery, the more people were on the lists.

Perhaps the most important thing to know about waiting lists is that we, as patients, do not simply get into line like we do at movie theatres. We are put on those lists based on several factors: firstly, the surgeon judges that we would benefit from the surgery and secondly the surgeon will make the list long enough so that in case of a cancellation, there will always be someone waiting to receive the procedure. From personal information given to me by a friendly surgeon, a three month waiting list is perfectly adequate for this purpose.

What have we learned? Patients do not have the right to put themselves on waiting lists for elective surgery, doctors do. And secondly, the more doctors we have, the more people will be on waiting lists. This is so even if each one has only a three-month waiting list. If you think this is a vicious cycle, you are right – more resources means more people waiting, and more people waiting means more resources are needed, et cetera. Go figure.

Next week we will discuss prescription drugs, the last topic of Paradigm Freeze.

Lazar, Harvey, John Lavis and Pierre-Gerlier Forest. Paradigm Freeze: Why is it so hard to Reform Health-care Policy in Canada. McGill-Queen’s University Press, 2013.

Policy from the patients’ perspective: needs-based funding

So far in this series on Paradigm Freeze, I’ve presented the various areas that the writers of selected for study. I’ve also focused on regionalization, as it became clear that the processes and consequences considered in the book were restricted to the boundaries of the current healthcare system and were especially focused primarily on acute care. The book appears to argue that it is hard to reform that system, but does not consider expanding or even significantly changing what the system contains.

The same appears to be true in their discussion of needs-based funding. For a long time, the funding for health care was historical: every year the budget for each health care organization was revised based on the previous year’s funding. The problem was that this funding model provided no basis for change or development, nor was it related to the changing needs of the population. The model of needs-based funding presented in Paradigm Freeze derives from an article called “The Financial Management of Acute Care in Canada” by McKillop, I., Pink, G.H., and Johnson, L.M. This article is concerned only with how hospitals are funded. Here is the main table that sets out the various types of “needs-based funding.” Note: Global funding is what we usually mean by historical funding.

Method  //  Description

1. Population-based:    Uses demographic or other characteristics of the population (such as age, gender, socio-economic status, etc.) to determine the relative propensity of different population groups to seek health services.

2. Facility-based:    Uses characteristics of the organization providing care (such as size of the organization, type of the organization, geographic isolation, occupancy rate) to estimate the cost to sustain a specified profile of cases and/or service volumes in the future.

3. Case Mix-based:    Uses a profile of cases and/or service volumes previously provided (such as a number of knee replacements, number of dialysis procedures) to estimate the cost to sustain a specified profile of cases and/or service volumes in the future.

4. Global:    Applies a factor to a previous spending figure (or to a forecasted cost) to derive a predicted spending level for an upcoming period.

5. Line-by-line:   Applies factors on an individual basis to previous cost experiences (or to forecasted costs) to derive a proposed funding level for each line item (such as housekeeping, inpatient nursing, etc.) for an upcoming period.

6. Policy-based:    Directs spending to address specific policy initiatives of the Department or Ministry of Health. These policy initiatives affect the operation of multiple organizations within the jurisdiction.

7. Project-based:    Flows funds to a single health service organization in response to evaluating a proposal from that organization for one-time funding, often for a major expenditure.

8. Minister discretion:    The Minister of Health decides on the specific dollar amounts to flow to health service organizations.

This is pretty comprehensive if we are looking only at what hospitals need. But it is not so good if you consider the health care system on a larger scale and the needs of people with non-acute long term conditions. It is especially not effective if we want to consider what such people need to stay out of hospital. During the study period of this book, we already knew that we had an aging population that could benefit from many health-related interventions apart from acute care and that it was generally a good idea to keep people out of the hospital. Therefore it seems really odd that Paradigm Freeze considers the health care system to be made up of hospitals and doctors and little else.

The result of this rather myopic view is that the study considers only provincial policies. It does not discuss the policy struggle between the health promotion community and population health researchers at the federal level. There is little doubt that this battle has important consequences for needs-based funding for health care in the broader healthcare system.

Health promoters were the offspring of the Lalonde Report, perhaps the most widely known policy document to emerge from Canada. In the 1970s and 1980s, they were a dominant force in Health Canada that instituted programs like ParticipACTION to encourage personal fitness, pressed successfully for anti-smoking campaigns, lobbied for and instituted seat belt legislation, reinstituted the Canada Food Guide which had been dormant since 1961, and initiated community development programs. Their loss of influence and funding meant that these and similar efforts slowed down and often stopped completely. ParticipACTION, for example, was disbanded in 2001 and only re-emerged in 2007 in response to the growing concern about inactivity and obesity.

Population health researchers derived their view from inequalities in health research in the UK. They argued that health promotion was an ineffective way of improving the health of the population – that it was important to consider the underlying causes of “why some people were healthy and others not” – that is to say, the underlying social and economic forces. The efforts of health promotion were considered to be ineffective in dealing with such disparities and some even argued that because they were largely focused on a middle class population, they actually increased inequalities in health. The population health group made up of health economists, demographers and health services researchers gained ascendency. Their mantra of reducing inequalities in health kept the focus on determinants of health over which individuals and communities had little or no control. Over the next decade it emerged that their control over the research agenda had very little influence on reducing inequalities in health through policy development. In fact, during their period of influence, inequalities have actually increased. Little wonder that current policy thinkers who emerged from that period should think that health policy has little impact on the system.

McKillop, Ian, Lina M. Johnson, and George H. Pink. The Financial Management of Acute Care in Canada: A Review of Funding, Performance Monitoring and Reporting Practices. Ottawa, Ont: Canadian Institute for Health Information, 2001. Print.

Policy 101: A patient’s introduction to the policy world

Paradigm Freeze: Why it is so hard to reform health-care policy in Canada, edited by Harvey Lazar, John Lavis, Pierre Gerlier Forest and John Church, is a very detailed attempt to explain the problem described in its title. The authors examine six policy issues that played a role in health care reform from 1990 to 2003. The issues were specifically chosen to provide a range that covered governance, financing, delivery arrangements and program content.

The authors assess how these reform ideas fared in five provinces. The scope of the study is worth exploring. The policy areas they cover are:

  • Regionalization (governance)
  • Needs-based funding (finance)
  • Alternative payment plans for physicians (finance)
  • For-profit delivery (delivery arrangements)
  • Waiting lists (delivery arrangements)
  • Prescription drug insurance coverage (program content)

The five provinces studied in detail were Alberta, Saskatchewan, Ontario, Quebec and Newfoundland, and there was no uniformity in the provincial responses. The pace of decision making varied from province to province, as did the considerations employed in making the decisions. As a result, they came up with a wide array of different policies about each of the six areas considered.

Throughout the next several weeks I will explore these and other policy issues in an attempt to bring a patient perspective to some of the material in this book. Because patients are beginning to play a role in policy development, I think it is worthwhile to present these and other policy issues from the patient perspective. I encourage you to tell me if I have succeeded and if these blog entries are of any interest to you, as I anticipate a learning curve for both of us. This week I will write about regionalization.

The idea of regionalization was taken from the structure of the National Health Service (NHS) in the UK. It was closely tied to two ideas: centralization of control and the introduction of general management into health care to make it more efficient through better management. The idea was to separate responsibility for health care from the bureaucratic Ministry of Health and put it into the hands of managers who would be responsible for managing the health of the population in their geographical areas.

The NHS had a traditional hierarchical structure with geographical regions that were each divided into a number of districts with their respective senior manager. The head of the NHS was the most senior figure and he or she reported to the Ministry. There were fourteen regions and almost 100 districts. Employees of the NHS were fond of bragging that it was the largest single organization in Europe apart from the Red Army. Now it is undoubtedly larger than the Red Army. The average population in a region was almost 4 million and each district had roughly half a million inhabitants.

In 1994, Alberta, with a population of a little over 2.5 million, created 17 regions – each with populations of less than 200,000. The transformation meant that the heads of hospitals and other health organizations would no longer report to their own boards; they now were managed by a regional general manager who in turn was responsible to a regional board. This meant that hospitals were no longer locally owned and governed not-for-profit organizations: they were now provincially owned and regionally governed.

Similar changes in governance occurred in other provinces that adopted regionalization. The effect was to centralize governance from the local level to the regional level, a major change in the structure of the healthcare systems. As you can imagine, this had a great impact on the social role of hospitals as well as their role in the healthcare system. It effectively changed the people who controlled healthcare by switching the focus from local to regional. One of the policy questions that should be explored is what are the benefits and disadvantages of taking health care organizations from the not-for-profit sector of governance and turning them into governmental organizations?

Next week we’ll look at need-based funding: what does this mean and how can changes in policy affect your health care.

Lazar, Harvey, Pierre-Gerlier Forest, John N. Lavis, and John Church. Paradigm freeze: why it is so hard to reform health-care policy in Canada. Kingston: McGill-Queen’s University Press, 2013. Print.

Choosing to die: four famous female patients

In this entry, I discuss four famous female patients whose deaths gave and continue to give us quite a lot to think about. What have dying patients contributed to our current thinking about death and dying? I thought that I would present four cases that made a difference to how I think about dying, and leave you to have your own thoughts.

Historically, the first death was of Sue Rodriguez who is famous in Canada. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 1991 and was prepared to die with the help of a physician. She sued for that right and lost her case in the Supreme Court of Canada in 1993. Nonetheless, she found an anonymous physician to help her die in February of 1994 and no charges were laid.

Sue RodriguezAlthough at the time there was some question about whether or not charges should be laid. Sue Rodriguez’s struggle with the law made it clear that we all had to think about what role patients might have in making decisions about their own way of dying. It began a decades-long struggle to increase patients’ ability to have more control over their deaths. It also, along with the stories about Dr. Jack Kevorkian, made the issue public.

Soon after her death, the New York Times on May 20, 1994 published a news report about the death of Jacqueline Kennedy Onassis, who had died on Thursday, May 19th, 1994 at 10:15pm.

Jacqueline Kennedy Onassis“Mrs. Onassis entered the New York Hospital-Cornell Medical Center for the last time on Monday but returned to her Fifth Avenue apartment on Wednesday after her doctors said there was no more they could do. Mrs. Onassis was surrounded by friends and family since she returned home from the hospital on Wednesday.” (McFadden).

Linda McCartneyFour years later, according to press reports, Linda McCartney, the wife of the former Beatle Paul McCartney, died on Friday April 17, 1998 in Santa Barbara, California, with her husband at her bedside. A statement from Paul McCartney’s office said the cancer had spread to her liver since she had been receiving treatment. A family spokesman quoted in the April 20, 1998 issue of the London Guardian said, “The blessing was that the end came quickly and she didn’t suffer” (CBS News). Two days before her death, she and Paul had been enjoying one of their main passions – horseback riding.

In both cases it seems possible that these two women had some quiet help in dying before they were ravaged by the disease. Linda McCartney was first reported to have died in California when in fact, she died in Arizona. Her death certificate was not made public and there was a great deal of secrecy surrounding her death. Some claimed that it was merely bad public relations, others considered that she had probably had some help in dying and that could not be made public at the time.

Jacqueline Kennedy Onassis did not stir up a similar response. However her death seemed to be altogether too orderly. On Monday, she entered hospital; on Wednesday, after her fate was pronounced at the hospital she returned home after a very short stay. On Thursday, she went for a walk in the park and then that night she died. It seemed likely that she had some help, but no one really pushed it.

It seems that first class patients could quietly get support in preparing for their deaths and it brought back the older tradition of well-off patients dying at home. It is interesting to contrast their deaths with our last case. Things seem to have changed by 2002.

From her obituary in the New York Times February 6, 2002 we learn of the death of Annalee Whitmore Fadiman:

Annalee Fadiman

“[She was] a screenwriter, World War II correspondent and the author, with Theodore H. White, of the best seller Thunder Out of China, died yesterday in Captiva, Fla. She was 85. Mrs. Fadiman, who as a member of the Hemlock Society supported a right to suicide, took her own life, said her daughter, Anne. Mrs. Fadiman had been suffering from breast cancer and Parkinson’s disease.” (Lehmann-Haupt).

As far as I can tell, this is the first declared self-controlled death reported in such a matter-of-fact manner in the media. It occurred only a few years after the deaths of Jacqueline Kennedy and Linda McCartney. Since then, the Hemlock Society has merged with other organizations and now call themselves Compassion and Choices.

There have been many changes in law and there is much more preparation for dying. There are clinics in Switzerland called “Dignitas” where, for a fee, families can stay with their loved ones as they are helped to die. Slowly more people are dying at home. And slowly more jurisdictions are supporting medically assisted suicide. Along with the efforts of Dr. Kevorkian, much of this change which has been driven by patients asserting their wishes and bringing them to bear on the system.

“Linda McCartney Dead at 56.” CBS News 19 Apr 1998. Web.

McFadden, Robert. “Death of a First Lady; Jacqueline Kennedy Onassis Dies of Cancer at 64.” New York Times 20 May 1994. Web:

Lehmann-Haupt, Christopher. “Annalee Whitmore Fadiman, 85, Screenwriter and War Journalist.” New York Times 6 Feb 2002. Web:

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.

Typhoid Mary

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's houseMary 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. techWe 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.

tech1The 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.

Henriette LacksThe 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 21st 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.