Knowledge Cartographer!

From the website Knowledge Cartography:

The aim of the research [on knowledge cartography] is to extend the cartographic metaphor beyond visual analogy, and to expose it as a narrative model and tool to intervene in complex, heterogeneous, dynamic realities, just like those of human geography. The map, in this context, is not only a passive representation of reality but a tool for the production of meaning. The map is thus a communication device: a mature representation artefact, aware of its own language and its own rhetoric, equipped with it its own tools, languages, techniques and supports. 


The part of this that fascinates me is that in my own attempts to understand the workings of systems that require the use of multi-level models to describe the relationships of the parts of the system to each other, I find myself creating my own internal maps to create an understandable relationship between those parts. Proximity is a measure of similarities between the parts of the system and the map is a narrative that gives the map contextual meaning. Not the narrative, of course, since another context or perspective could rearrange the parts in the map bases on another way of measuring similarities between the parts of the system. Then there are questions about how many dimensions can be represented - or rather how many dimensions have to be ignored or collapsed in order to place the visual map into a 2-D or 3-D representation. 


So if I have thought of myself as a novice knowledge engineer/explorer, now I can think of myself also as a knowledge cartographer. And I can see how this is connected to the work of Katy Börner, who has worked on the ways of visually representing scientific knowledge and who taught a half-day workshop I was privileged to attend a year or so ago.

Feedback Loops in Healthcare Research

The subtitle for this could be "Healthcare Research as if People's Health Really Mattered".

• I woke up this morning to my wife's coughing, wondering if it is "thrush" making a comeback.  Thrush is a fungal infection of her lungs that is a "side effect" of the medication she was taking during her Hep C treatment.  
• Carrie also has a suppressed immune system that is the result of the chemotherapy she received for breast cancer treatment that makes her more susceptible to colds and infections from cuts.  
• One other long-term effect (late effect) is the reduced cognitive function, again one of the "side effects" of chemotherapy.

So since I am so involved in cancer research as an informaticist I am aware of the various programs that are funded to understand and find therapies for cancer.  There are studies that are ongoing, but I wonder about the sense of urgency that is really in place.  There is such a focus on "finding the cure" for cancer that we forget the people who are "getting the cure".  What is the quality of life after such a cure?  This comes up for men and treatments for prostate cancer that leave them incontinent and with reduced sexual function.  They are thinking, "You call this a cure??  Sure, I'm alive, but I have to wear diapers and I can no longer even have, let alone enjoy, sex."  What would happen if people decided that they would rather be treated for the symptoms of the cancer with palliative care than be cured because they did not want to live with such a cure?

So I was thinking/wondering about what it is that drives our healthcare system in general terms.  Being in the US, the primary driver is really about making money.  Students go into med school and choose to be a specialist because there is more money in it.  Pharmaceutical companies invest huge sums of money into drug development because a blockbuster drug will repay the huge with vast sums of money.  The underlying theoretical framework driving these processes is the idea that the only way to really make progress -  in any field - is if commerce is in charge.

Rather than rejoice whenever a new hospital or medical research facility breaks ground we should weep and not rejoice.  It means that more money is being sunk into more "cures" and not in fixing the ones we already have.

Confusion about community and social policy

It occurs to me, after all of the right-wing rhetoric about healthcare reform, that the right-wing of the Republican Party is getting confused about what community and social policy are about.  I don't know if it's the similarity between "community" and "communism" or between "social policy" and "socialism" that gets them tripped up.  If we are to live with each other, we need to find that balance between what/need I want and what you want/need without going into a rage or killing each other.  I know that my parents raised me to deal with that boundary in a civil manner, and even to find new insights into myself and the other person from the struggle with that boundary.  That is my microcosmic take on community.

For me social policy, or laws that pertain to something other than crime and punishment or defense of the community as a whole, comes out of an awareness that there is a balance to be found between me and my community.  Taxes fund projects I may find silly or disagree with, but I have my representatives who I write to about this and try to convince of my side.  But it is a debate and not a war.  If I lose it is not my life I am losing, it is just that I was unable to sway 51% of my group - be it town or county or state or country - to my way of thinking.  If I lose, it is not the end of civilization.  I think that tax policies in my state, New Hampshire, have gone way into dysfunctional, but I am not out raging at my fellow citizen who disagrees with me about how to fix it.

Take a chill pill and some time to reflect.  Stop watching 24-hour news and following blogs and reacting immediately to every tidbit.

Healthcare Reform

There have been just so many column inches, blogs and tweets committed to commenting on healthcare reform, but something I find missing in almost all is a sense of how all the parts that make up our healthcare system is an awareness that these parts do interact; they are not independent of each other.

The link for this posting is to an editorial in the local paper, the Valley News, that was attempting to summarize a series of interviews done by a local reporter, John Woodrow Cox. In an all too typical fashion, the editorial made no attempt to synthesize the six viewpoints presented by the six individuals who were interviewed. Cox himself said that the only constant between and among the stories was a lack of consistency. Well, you might just as well throw your hands up and say, "I give up! It's too hard and no one will ever agree!" This is unfortunately all too typical of the reporting we are seeing everywhere. Is it really that hard to get someone from The Dartmouth Institute who might be able to shed some light on this?

Letter to GOPUSA.com Owner and Editor

I've been getting the daily dose of headlines from a site that states that its goal is to remind the Republican Party of their conservative base. Other than an article that questioned Sarah Palin's decision to resign early from her governorship, for which he was roundly criticized, most of the articles are typical "red meat" for the conservative base. Here is a letter I wrote to the editor:

I guess from your bio that you are well set in your ways, adhering closely to dogma, so I don't believe any feedback I may give you will cause you to rethink anything to say or do. However, I'm an optimist at heart, so here goes.
The biggest change that I saw that Barack Obama brought was a deep knowledge that problems we have today do not have simple causes and their solutions cannot be achieved by one-dimensional and dogmatic thinking. President Bush saw the world as very black and white, good and evil, so the shift in approach was very refreshing.
I believe that both Democrats and Republicans suffer from the same kind of linear thinking that most people have, so it's no wonder that Obama is having a tough time with both sides of the aisle. What I don't really get is the value-add that you think your site provides to the dialogue and discussion, unless you are not really interested in having either. Highlighting extremes of behavior or isolated events and then attempting to infer/imply that these represent everything that a person or policy or group have to offer is just plain demagoguery and only serves to allow the most base of our human instincts to flourish - outrage, anger and contempt to name a few - and not the best aspects which include reason, humility and compassion.
I have done software development for large diverse groups for more that 15 years and from that experience I can say that the best solutions come from having all stakeholders at the table, all offering what they can to find a solution. I see that Obama has attempted many times to have Repuplicans be part of the decision-making processs, but instead of stepping up to do so they have instead chosen to remain on the sidelines, whining, griping and sniping. A solution to healthcare in this country is not going to work if it is Democrat or Republican. No one of us has a lock on the Truth. We can only discover what works by working together on all this. Having people at Town Halls yelling from the back of the rooms to shout over speakers is just bad form - my mother - and yours, I would hope - would disapprove of such brutish behavior. This is not a sign of general discontent being voiced, it is a sign of poor upbringing.

Healthcare Reform and Linear Thinking

I've been listening to and reading responses from conservative Republicans to the Obama Administration's effort to reform the way health care is being performed and paid for in this country. I've frankly been astonished at the level of vitriol being issued by talking heads and bloggers on the right. You would think that Obama was one of the four horsemen of the Apocalypse and that as a result of health care reform we would all be forced to wait for hours in order to get substandard health care. Oh, wait, we already have that.

So, no it's that we will have some bureaucrat in Washington, DC deciding on whether or not we can get care. Oh, wait, we already have that...except my bureaucrat works for Aetna; but his or her role is the same: deciding on whether the care I get is appropriate or not.

So, no, it's that health care will become extraordinarily expensive if we make changes we will all be paying dearly just so everyone can get covered. Oh, wait, we already have that! Hospitals already have to charge insurance companies a premium over their actual cost since a certain percentage of their patients have no insurance or their insurance has been maxed out and so we do pay for the uninsured and under-insured. Plus a public hospital is legally bound to provide care to all, no matter if they can pay or not, so guess whose taxes pay for that?

There is a system that has grown around the payment for health care in this country that has constantly been pushed to shift costs from one group to another. As a result, in this country we have very little relationship between how much care costs and our health, as demonstrated in the Dartmouth Atlas project. So paying more does not give better care! How more non-linear can one get?

So how can we solve the issues surrounding health care reform? Not through the kind of dogma-driven arguments we have been seeing. Dogma has a very linear view of the world: there is my way (the right way) and any other way (the disastrously wrong way). Dogma is driven by belief systems not by data - just think of Galileo and the moons around Jupiter that could not exist in the Catholic Church's view of the world. Dogma is not interested in data that does not fit in to an established world-view since that data threatens the very stability of that world view.

Systems thinking relies on the kind of data that is provided by the above-mentioned Dartmouth Atlas project as well as many other Comparative Effectiveness studies. Systems and holarchical thinking value any kind of insight and data that does not fit into established ways of thinking since that is how we come to know more how a particular system works.

So a holarchical/systems view of health care looks at all aspects and contributing factors to one's health - genetics, lifestyle, family dynamics, community, socio-economic factors, environmental effects, access to care, employment, presence or lack of health insurance and one's spiritual life just to name a few - and how a health care system can be constructed to improve all our health. If we agree to put aside dogma and let data speak to us we can start the process of understanding how to move forward.