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.