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Going Beyond Comprehensive
Taufik A Valiante MD PhD FRCS
Co-Director, Epilepsy Program
Toronto Western Hospital
When it comes to health care, the term comprehensive has often been applied to make us think about a medical system that can provide care for all aspects of an individual's life affected by a disease or disorder. It's not a bad term and the phrase comprehensive epilepsy care is something that likely started in the United States when standards were passed to create specialized epilepsy centers to improve access and services to those with epilepsy. It is a term that reminds us that there is more to epilepsy than anti-seizure medications (ASM), and that to be effective for an individual with epilepsy, the healthcare system must provide a whole host of other services. Although I don't really mind the term comprehensive, I would like to introduce a few other terms to round out this concept. These new terms are being born out of the changes that are occurring to the health care system in Ontario, and the realization that how we actually provide health care, not only to those with epilepsy, but to all those with a chronic condition must change.
The first term I would like to define is the term chronic condition. I am sure that most of you reading this have an intuitive idea as to what this means. An important part of the definition of a chronic condition is that it affects individuals not only biologically, but it has profound effects on an individual socially and psychologically. For example, although a seizure may last only a couple of minutes, and have after effects that may even last days, losing one's job because of a seizure can have profound social and psychological effects that far outlast the seizure and its biological after effects. It is also important to realize (although for those of you with epilepsy you live this day to day) that chronic conditions may last many years, or possibly a person's entire lifetime.
The second term incorporates this concept of chronic condition, and is something that will be coming to Ontario in some form or the other. This term is Chronic Disease Management (CDM). CDM is an emerging idea, realizing that people with chronic conditions require a healthcare system that is organized in a very different fashion than how medical care is presently organized and provided. CDM argues that the healthcare system (from the big downtown hospital to the family doctor's office) is only a small part of the picture. It realizes that that the ultimate goal of improving our healthcare system is to not only strengthen healthcare organizations, but to empower the very people dealing personally with their own chronic conditions. They need to become part of the system and participate fully in their healthcare. CDM is a much broader solution than a comprehensive solution, but it contains many similar concepts. The common ideas are those that involve making healthcare organizations more fit (equipped) to deal with chronic conditions. Where it differs is that CDM (which is based on a lot of good solid evidence) argues that the person with epilepsy is not a passive player is all this healthcare stuff, but is an active participant. As they say, "it takes two to tango", so not only does the healthcare system need to become actively involved in managing a chronic condition, it is vitally important that the individual with that that condition participate fully in their care. CDM also recognizes the indispensable role of community organizations like Epilepsy Ontario, Epilepsy Toronto, the Epilepsy Support Center in London, among other agencies throughout Ontario, are all part of the Canadian Epilepsy Alliance. These organizations should (and we still need to work on this) work seamlessly with healthcare organizations so that we are all on the same page and speak the same language. Organizations such as those listed above provide services that hospitals can and will never provide, and thus it is important that these parts of the "epilepsy network" speak to each other and know what one another is doing. The glue that binds this network is the individual living with epilepsy. They need to make the network accountable. If something is not working, they need to raise their voices and let people know.
As I have already slipped in another term, that is network, I will add a term to this to round out the picture, and that is integration. In my mind these two words go together, since a well functioning network needs to incorporate (integrate) all those things that are running separately on their own, into a web of connected people, ideas, and services. Amongst all the benefits of a network, the one thing that networks do exquisitely well and with very little cost is that they can spread information very quickly from one part of the network to another. As the adage goes, "knowledge is power", and if we all are well connected and informed, we can make choices. If we are without information, we are without options.
If all this seems a little pie in the sky, it is important to realize that major changes are happening to the health care system. CDM will be coming to Ontario and health integration is already taking place through the formation of fourteen different Local Health Integration Networks (LHINs). These changes are so new that individuals at all levels of these changes are still unsure as to what form they will take. For those with epilepsy however, there is much work to be done. Recently, the Ontario Health Technology Advisory Committee in a report to the Ministry of Health of Ontario estimated that amongst the 10,000 or so individuals in Ontario that could benefit from surgery for their epilepsy, only 2% of these individuals are receiving these services.
A common voice requires a common language. Integration and chronic disease management are part of a new language, a language we will need to speak if we are to improve upon the present.
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