This has been something I have thought about pretty hard for the past 5 months… but being a computer geek, I have thought about numerous times in my life. I have been plagued by exposure to suicide since I was a teenager. It started with a friend named Trey Mckenzie in high school. It moved on to his girlfriend Jennifer Garner. Then it went on to a friend named Marcus Atria. Then again to a friend named Ron Gardener. By the time I was 21 years old, I had lost 20 close friends to suicide. The local paper in Columbia, SC even referred to it at one point as a “suicide pact”. I was not aware of any kind of pact within our group of friends. What we did have was a boyfriend and girlfriend separated because of a pregnancy, which led to both of their suicides. From that point on we were a group of outcast punks and metal heads left to figure things out on our own.
The Health Insurance Portability and Accountability Act (HIPAA) was enacted by Congress and signed by President Bill Clinton in 1996. Title I of HIPAA protects health insurance coverage for workers and their families when they change or lose their jobs. This is not an area of HIPAA that we are focused on in this article. We are more concerned with issues in Title II of HIPAA, and some of the newer changes brought in by the Health Information Technology for Economic and Clinical Health Act (HITECH Act).
One of the things HIPAA provides in Title II, pertains to electronic transactions of healthcare and insurance-related data. In today’s world, most everything is handled electronically. I honestly personally believe in almost everything that HIPAA provides in terms of protecting the anonymity of people in the United States Healthcare System… but there is one big thing that I cannot stand about it.
There needs to be some push to take all of the aggregate data and anonymize it, but make it available so that we can begin to look at mental health in a new way. If we could go to our doctor’s and fill out a survey on a tablet, or a piece of paper and have them check your selections against all of that aggregate data, we may begin to see some pretty telling patterns. This is just not enough. The world is so connected today that it would be easy for us to take all of that aggregate health care data, and merge it with social network activity, email activity, telephone activity… the list goes on and on.
The really cool thing is that if we could build the infrastructure to tie all of our digital life as an individual together, and compare that against other people anonymously then a whole new world of things can take place. When you take a typical medical depression screening the doctor could key your answers into their system, and get back a ton of information from the system relating to people who suffered from similar problems. Everything from whether or not their mental health led to an identifiable mental illness, to chronic depression, or to suicide. It could very well go so far as to be able to predict suicide in a percentage of patients, which in turn around allow medical professionals immediately choose the best treatment plan to ensure that their patient is around for their next visit. The same thing could be said for other types of mental illnesses. We could sometimes predict what people are more likely to commit an act of domestic terrorism for example. The possibilities of what could be done with such a massive collection of connected aggregate data is mind-blowingly amazing. It could be massaged and scraped in various ways and really shine light on some things, and bring us to completely new ways to look at mental and physical health.
It could very well improve health care of all kinds the world over. It very well could lead to the end of the rise of suicide statistics in the world and we may actually begin to see those numbers on the decline.
In order for those connections to made, some type of identifier has to be assigned to each record that ultimately ties it back to a person. That has to be done so that all of the little bits and peices of information collected by many different entities can be linked together. If we ever intend to be able to pre-emptively act against suicide, it literally has to at some point tie back to a human being. That is my biggest fear as far as these new ideas go.
There are inherent problems with all of this as well. That opens the system up for so much abuse, that it would have to be airtight in terms of protection and assuring that only people who are supposed to have access to it actually do. Along with that comes the danger of government interference, using things like the Patriot Act to gain access to information it really has no business utilizing for the purpose they are accessing it.
All of the random moments in my life that I have spent thinking about this led to last night. The first time I joined the SPSM live chat. Interestingly enough, I could not have picked a better subject for me to join on. It was all about hack-a-thons and how to take existing datasets and extract information out of them that are important to mental health care. If you have no idea what I am talking about you can watch that live chat below.
FINALLY, someone is starting to look at collecting and building datasets from all of that aggregate data. Someone who also is devoted to maintaining the anonymity of the trillions of people that may be represented by that dataset. This literally could not have been a better SPSMChat for me to tune into. Seriously, being a programmer… being a nerd… and being a geek… I was hooked from the very start. I will never miss another SPSMChat again.
I am sure there will be another time that I go into this topic again. Probably in a lot more detail. I really do just think it is time that we start looking at new ways of understanding mental health, wellness, and illness and perhaps even move in the direction of being able to predict the outcome one person may have with regard to their mental conditions. Treatment plans could dramatically change in the future from having all of this data available to care providers. Couple the dataset with health information gleaned from sources like 23&Me genetic testing and we start to see percentages and likelihood that you may or may not be affected by a specific illness. We can really start to put together a full picture of people and their physical and mental well-being. Then couple that pair with new technologies like GeneSight Psychotropic Testing or Millennium Health Pharmacogenetic Testing and treatment plans can be customized from the start with a much more predictable outcome.
The possibilities and combinations of things really is unfathomable, but with the right technology, security, and a front-end medical professionals can use easily the entire face of medical health and mental health care could change in some very exciting ways.