Who cares about you, and whom do you care about? Every year billions of dollars are spent trying to figure out, just this. Why do you think the advertisements you see on Facebook are so accurate? Every time you online shop or search products or services on Google, measurements are being made like how long you spend looking at these products or whether you buy them. I’d say they are doing a pretty good job…
Isn’t it so comforting that the Internet can now predict your shopping habits but the people measuring your behavior for health purposes are still trying to get it right. #NiceTryWebMD
As it turns out the World Health Organization (WHO) and many international global health groups had been trying to determine what is ailing you and those you care about since World War II. Unfortunately, they didn’t have consistent data. Between them there were discrepancies amounting to millions of people. So, through years of work beginning in 1993, the people who eventually became International Health Metrics and Evaluation (IHME) started cleaning up the numbers.
In 2007 $155 million was the starting budget for the Institute for Health Metrics and Evaluation (IHME). Since then, they have spent more money and worked to reliably determine not only what leads to our death, but the illnesses we live through.
Of course, as you look closer, using IHME’s online tool GBD Compare you can see that the picture changes depending on what part of the world you are looking at. Furthermore, IHME tries to measure the health of the entire world so they may be off by, you know, a few people… here’s hoping you are not one of them!
The reality is there are about 7 billion people in the world and 1 building full of people are trying to diagnose all of them—error is expected. Don’t get me wrong, the rigor of IHME’s work is impressive but, the amount of data there is so enormous there are bound to be mistakes. The error may be in a small percentage of the numbers, but a small percentage of billions could equate to a value in the millions (as mentioned by Kate Lofgren former IHME fellow). IHME does a great job, but we can’t rely on them alone.
What about the other people? Well, the WHO is a bureaucracy run by politicians. Even when led by someone who is passionate about accurate measurements of health (like Gro Harlem Bruntland) making change there is like trying to run while pulling a train behind you. Except in this case the train is the over 190 member states who want to weigh in on the decision.
The NGOs, on the other hand, are institutions run by the money they receive from philanthropic donors. Correcting their measurements runs the risk of determining that the disease they champion affects less people than they predict. Thus, if they change their estimates they risk loosing donors. I’m guessing they are not into that.
So, where does that leave us? How I see it, the world is full of people who are the experts on their own body. Not even your doctor knows more than you do about how long you were impacted by a certain illness or disability. For that matter, you may live with disabilities that you themselves do not view as a problem, but that a doctor would have a name and treatment for.
If you want the $7 trillion dollars spent on health care to go where it is actually needed, it is up to all of us not a group of statisticians.
If everyone who has access to Internet reported their health experiences, in an online health database that would be 3.2 billion people or about half the world population. Now, before you go all big brother on me, take a second to think about the alternative we are living in now.
Right now, IHME together with the bureaucratic numbers from WHO, the well-intended estimations of NGOs, and politically inclined government agencies make estimations that determine where the world’s $29.4 billion of health aid goes.
Why not speak for yourself? If we could incite participation, the database could be whatever we wanted it to be. It could be like the Facebook of health– “Healthbook”– you could decide what to share and what not to share, and you could connect with people based on your relationship, location, age, and common health conditions.
Imagine every time you updated your medical status, you were flooded with resources for self-education, and more importantly connected to other people who are dealing with the same thing. This could be uplifting to someone who feels alone, and an empowering atmosphere to raise the voices of disabled people. Your health needs would be self-evaluated, and trends in the information could be used to focus medical research or the organization of health systems.
All of the sudden, your family medical history would be available to you. Alerting you to important hereditary trends, for diseases like cancer. With a live data feed, you could even receive notifications when there is a stomach virus going around in your child’s school.
Aren’t motivated to track your own health?
Don’t do it for you, do it for everyone else. The more people participating would mean less people IHME would have to speak for. Furthermore, IHME could have access to the data (with permission of users) and less money would be lost in the guessing game. IHME’s funding could be used more efficiently researching regions under-represented in the “Healthbook.”
As stated by Jeremy Smith in Epic Measures “The vision of the world with health for all require[s] shifting focus from treating diseases to treating people, whose particular ailments [are] always changing.” A live feed health record would be able to keep up with the changes in global health in real time. Not to mention, you would be able to speak for yourself, and watch the health system be there for you and those you love when you need it most.