Note: This is a semi-rant on the current state of healthcare and innovative technology and why we all should be motivated to do something more about it. The opinions expressed here are mine and mine alone (Chimezie Ogbuji).
We recently wrote-up a case study for the W3C Semantic Web Education and Outreach Interest Group:
A major difference between the user experience with SemanticDB and the previous interface to the relational technology-based Cardiovascular Information Registry (CVIR) that has accelerated adoption of Semantic Web technologies is the use of local terminology familiar within the domain rather than terms that are a consequence of the physical organization of the data. In addition, the model of the domain (expressed in OWL) is more amenable to extensions typically associated with targeted studies that introduce additional variables.
It is an overview of the work we have been doing on clinical research driven by the value of having well-curated population-level patient data. It is a very appropriate use case for the semantic web in two respects: the problems addressed by the specific technologies used are directly relevant for clinical research, and certain sociological aspects of the semantic web (altruism through innovative technology, open communities / standards / software, etc.). This later point isn't emphasized often enough, though I've been thinking quite a bit about it lately as I've been developing a compact ontology for medical records. This started as a side project associated with the activities in the W3C Semantic Web Healthcare and Life Sciences Interest Group that I am involved in but has since become a personal project to investigate a personal philosophy that has recently come in contact with the nature of my current work through a tragedy in my family.
One of the things, I would like to do is learn a bit about the ailments in my family through active engagement of the science behind these ailments. I'm a software hobbyist with aspirations for contributing to pragmatic application of knowledge representation to common human problems. I have access to all the technologies and tools that can make a personal medical record repository a reality for me. I have access to a massive, freely available, well organized ontology of clinical phenomenon (GALEN). Common sense suggests that there is no one more motivated to learn if such an excercise is fruitful than myself. I could sit around, waiting for modern medicine to catch up with the reality of the innovative technologies of today, but why should I wait? Why should we wait is the question I really want to ask, but at the very least I can do something about my immediate situation (we have royalty-free standards, open source software, and open communities to thank for that).
If I have tools which can draw sound conclusions from well-currated information about all my medical history (and the medical history of my loved ones), document the complete set of justifications to these conslusions, reduce forms-based management of this information to a trivial task, and can be stored in a content repository, is it not in my interest to take advantage of these tools to the benefit of my health and the health of my loved ones?
To a certain extent, applying innovative technology at the point of care or for research purposes is a win-win. No brainer, really. At least it shouldn't be. It is in the best interest of both healthcare providers and recipients of healthcare services to leverage innovative technologies.
I work for a non-for-profit organization with a mission statement to the people of Cleveland. I'm one of those types who take such thing serously (oaths, mission statements, etc.). I was born (and essentially raised) in the greater Cleveland area. I have (young) children and family here. In addition, there is a strong history of hypertension and diabetes in my genetic lineage. I've lost loved ones at the point of care. The combination of these things makes the work I do much more relevant for me and as such I take it very seriously.
The ridiculous cost of healthcare, its effectiveness, and curation of expressive, patient data for the benefit of scientific reserach should be thought of first as a problem that modern science has a duty to solve rather than simply a business oppurtunity. A certain minimal amount of altruism is required. Anything less would be a diservice to the silent oaths that nurses take when they dedicate their professional lives to the healthcare of the populace with a vigor that only few can demonstrate. My mom was (and is) an incredible nurse, so I should know a little something about this.
At any rate, I think collectively we sit at a point of transition and reformation in the way healthcare information is housed, managed, and leveraged. I believe the shape of things to come will depend largely on how well we understand that altruism deserves a very prominent seat in all this. Everyone is effected by unecessarily expensive healthcare costs, even the providers themselves.