Modern health care systems emerged in the late 19th Century from the ascendance of scientific medicine. The major killers at the time of Robert Koch and Louis Pasteur were infectious diseases such as anthrax, tuberculosis and typhoid fever. These scientists were among the first to identify the microorganisms that cause such disease and then to develop vaccines to prevent them. Their success spurred the construction of the modern acute care hospital. It led to the professionalization of physicians and nurses, replicable testing, definitive treatment protocols, and research on the prevention of diseases.
Because most infectious diseases are clearly identifiable, there was little or no ambiguity that required patients to be engaged. Once this paradigm was established in the early 20th century, typical patients gave their bodies over to the system and, once admitted to the hospital, contributed little or nothing to their treatment. These health care systems were enormously successful. Between 1900 and 1970, the system achieved much of what it set out to do: there was a dramatic decrease of mortality due to infectious disease and a similarly dramatic increase in longevity. On the way, we developed an expert based system that provides acute care while using clear, evidence-based protocols with very little patient participation. The hope was that all diseases would ultimately be dealt with in this way.
Today, comparatively few deaths result from acute illness caused by microorganisms. Instead, the vast majority result from chronic non-communicable conditions with multiple causes, long periods of development, and episodic acute events. The course of chronic illness is far more ambiguous. It can vary considerably from one person to another and in the same person from one time to another. To make the situation even more complex (and in further contrast to the treatment of acute infectious disease), at least a third of those who suffer from chronic illnesses have more than one such condition.
Clinical intervention is only one aspect of managing a chronic condition; it also depends on many other factors that enable and encourage patient and family participation in understanding and managing such conditions. Becoming sensitive to the impact of life style and nutritional changes, being able to partner in decisions about drugs, and keeping a watchful eye on the effects of particular doses all contribute to the ongoing management of chronic conditions in order to maintain health and avert those acute episodes associated with the condition.
Because it is based on acute infectious diseases, our system is not structured to respond well to the uncertainty surrounding chronic illness and to accept a partnership with patients. The system continues to seek rigorous identification and protocol-driven treatments. However, chronic conditions require much more individualized treatment. Peoples’ capacity to change lifestyle and diet vary considerably, and drug mixtures have different effects on different individuals and vary even in the same person at different times. This variation becomes even greater for the 30% of people who suffer from two or more chronic diseases. The nature of chronic disease therefore results in intense frustration for researchers, practitioners, managers, and policy makers who hope for formulaic responses to every condition and who are not trained to understand the patient’s and family’s experience nor to and see their participation as a vital contribution to treatment.
There is no doubt that professionals, disease based organizations, policy makers, and politicians all wish to promote the interests of patients, but their views often differ from each other and form that of patients themselves. Despite patients having become more capable of speaking for themselves, they haven’t fully joined the discussion about the future of their health care. It’s time for them to do so.
But patients cannot be expected to do this as individuals. Just like professionals and policy makers, patients need organizational support and preparation to understand the issues being discussed. Patients need to come together to form the organizational support to bring their perspective forward to help the system change.
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Great overview, Shalom. I think Jeffrey Simpson in his recent book ‘Chronic Condition’ missed an opportunity to include the rise of chronic conditions as reason for making changes to the health system. Arguably it was outside his remit – but that’s the problem isn’t it?
Though here I speak slighly awkwardly, as someone who ‘speaks for patients’, I in my work at Arthritis Care in the UK I found a clear niche to distill the rich practical wisdom from people living with Arthritis, and present this in new ways to a much wider audience of people newly diagnosed and starting to live with arthritis.
There are a few organized patient organizations and I am a member of two of them, The Best Medicines Coalition and The Canadian Arthritis Patient Alliance. Governments and Academia would like to put us all into a nice box to bring out at their convenience, unfortunately it is not as neat and tidy as they would like it to be. The perspective we bring to the health care debate has been sadly lacking but if considered could finally move our healthcare system into the 21st century and effect lasting change
This is not unusual. It is deep in our culture that others speak for patients and we don’t speak for ourselves. Now that it is beginning to change people are beginning to notice how little voice patients have in the system and are beginning to change it.
We receive more and more invitations to join such conference and people are sometimes surprised at how much we can bring to the discussion,
Thanks for this overview, Shalom. Interesting discussion on this very topic going on now at Linked In’s #hcsmca group: http://www.linkedin.com/groups/Connect-other-healthcare-leaders-NATIONAL-3487112.S.224279710
It started innocently enough when a Toronto company called Strategy Institute posted an announcement about their upcoming National Forum on Patient Experience, and snowballed once readers found out that this conference for “senior health care executives” includes NO patients.