My thesis research calls for collecting IBIS documents to study and, perhaps, to merge. I’ve been collecting IBIS conversations about climate change, one from Debategraph, two provided by MIT, and one I created by harvesting from a webpage, described here. I could, of course, use more such documents. But, I have an opportunity to begin exploring personal medical situations using the same hypermedia discourse platforms. That’s what I did.
I created an IBIS document using Compendium that essentially asks this question: can Coley’s Toxins be used to combat thyroid nodules? I put the constantly evolving document online here. Let me explain it.
As an IBIS conversation, it is a tree rooted in some form of a context. Sometimes, the research question is the context. Sometimes, a background statement is that context, as is this case. As a topic mapper, I chose to create one branch of the tree called Topics, in which I am recording all the nouns that come up in my research. It’s an experiment. Things will change. For now, the nouns are organized in a “cheap taxonomy”, one that will certainly change over time. Other branches sketch the research methodology, the question, and then two domains of interest: the visitation and therapeutics.
It’s pretty easy to use Wikipedia to find out what Coley’s Toxins (adjuvants) are; in brief, they were discovered back in the late 1800s as a way to deal with cancerous tumors. They are, essentially, bacteria that, when injected directly into the lesion, provoke a massive immune response that takes out the tumor. Unfortunately, until they learned how to inject killed bacteria, the patient did lose the tumor, but died from the bacterial infection as well. Over time, even as recently as 1990, Coley’s Toxins were still being investigated.
The point of this work, aside from a personal investigation into matters that matter, is to continue the evolution of ways in which patients can conduct research into matters that matter to them. In the long run, if that research is conducted in online social settings, more people are engaged, more people contribute–think, crowd sourcing personal medical research–and the opportunities for synergies abound. When the setting is part of a knowledge garden where stakeholders of other kinds are also engaged, no telling how far we can push the envelope of reducing health care costs while improving outcomes.
The single largest improvement to outcomes, I strongly believe, occur when patients take control of their situation, which, end-to-end, means being part of the research team that finds answers to complex issues that result from the visitation with which they deal.