Long-Term Disease Database Proves the Value of Vaccines

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To find out when whooping cough started making a comeback in Ohio, or how often measles kills in America, we turn to historical records. But those records aren’t very useful when they’re squirreled away in a distant office basement. The same goes for when they are embedded in a report—you can only look at them in the same way you might admire a painting, but you cannot drop the data into a spreadsheet and hunt for statistical significance. If you are only looking at a couple years’ worth of information that formatting dilemma is not such a big deal. You can scour the data and manually punch it into your analysis. It only becomes a huge problem when you are looking at hundreds or thousands of data points.

Such is the problem that public health experts at University of Pittsburgh encountered when they were exploring old medical data and developing models that predict future outbreaks. “We found ourselves going back and pulling out historical datasets repeatedly. We kept doing it over and over and finally got to the point where we thought it would be not only a service to ourselves but everybody if all the data was made digital and open access,” says Donald Burke, the dean of Pittsburgh’s graduate school of public health.

Four years ago, buoyed by funds from the National Institutes of Health and the Gates Foundation, they started the process of digitalizing 125 years worth of medical records. The endeavor was dubbed Project Tycho, named for the Danish nobleman Tycho Brahe who made the voluminous astronomical observations that Kepler later tapped to develop the laws of planetary motion. (But no pressure, right?)

The online, open-access resource now features accounts of 47 diseases between 1888 and today. It includes data from the weekly Nationally Notifiable Disease Surveillance reports for the United States, standardized in such a way that the data can be immediately analyzed.

Written By: Dina Fine Maron
continue to source article at blogs.scientificamerican.com

12 COMMENTS

  1. On this website, I think this article is preaching to the converted. It’s a pity the subscribers of anti-vaccination pseudoscience websites don’t get to read this sort of article. Then less kids would be dying of preventable diseases.

    • Although your statement is true, it still is nice to see:

      1. industrious people doing something to advance the well being of others.

      2. FACTS that clearly (slam dunk) illustrate that one side of a “controversy” is (slam dunk) correct!

      And, you are correct that we are the “choir”. Let’s raise our voices about this and send the link repeatedly to the anti shit heads…

      In reply to #1 by David W:

      On this website, I think this article is preaching to the converted. It’s a pity the subscribers of anti-vaccination pseudoscience websites don’t get to read this sort of article. Then less kids would be dying of preventable diseases.

  2. I just love the way science works.

    Isiah Berlin claimed that there are basically only two types of people: hares and tortoises. I think of scientific methodologies as resembling the second of those two; slow and laborious but ultimately accomplishing the task.

    Especially important factors when it comes to uncovering fraudulent results!

  3. We kept doing it over and over and finally got to the point where we thought it would be not only a service to ourselves but everybody if all the data was made digital and open access,” says Donald Burke, the dean of Pittsburgh’s graduate school of public health.

    There are probably masses of paper records which would benefit from similar improved access!

  4. I like big data. You can do cool stuff like this for the benefit of us all.

    I hate big data because of the privacy implications.

    Society needs to get that this is a very sharp double edged sword, and put laws and enforcement in place so we get the benefits of aggregate statistics or anonymous inference, without identifying individuals and destroying their lives.

    For instance, suppose there was a correlation between brief childhood illness and old age mortality. In order to find it, medical records would have to be kept to identify individuals over a lifetime. Only 50 years later could it be known that disease A at age 10 gave a 1% extra chance of dying before 60. That is useful for public health – either prevention of the childhood disease, or subsequent treatment. It also is of interest to life insurance companies. But suppose the issue is teenage STDs? Does an insurance company have a right to the data? Maybe it does, but what happens if it leaks to your boss, or the people who are about to interview you for your dream job?

    At least the UK NHS takes away the issue of health insurance. We are all insured as a collective, and those who get raw deal of genes, pathogen encounters, or recklessness are subsidised by those who had a better draw. Should the same be done for limited life cover? If a father pegs out in his 40s the UK social security system will look after his widow and young kids to some extent, but they will be far less miserable if private life insurance paid off the remaining £80K of mortgage on the modest family home.

    From what I remember of the details, I think EU went the wrong way about 10 years ago. Iceland has a small isolated, inbred population, with good historical records. It is easy to find everyone’s great-great-great grandparents, and any random pair of Icelanders are likely to be 5th cousins at least. A few years ago Iceland started collecting a genetic database of everyone in the population. It would have been a boon to human genetics research. Then a woman asked for the data for her recently deceased father to be erased. It was obviously no longer to his medical benefit as he was beyond medical help. However, it was obviously still of benefit to medical research. The case went as far as the EU, and she won. Privacy outweighed the collective interest, and as a result the Icelandic government halted the program.

    I think such medical databases should use anonymous but unique IDs to people. Only GPs should know the IDs of their patients, and enter details. Researchers should have access to the database. Only collective statistics and research findings should be released to the public. There should also be rafts of laws preventing use or disclosure of inferred information. For instance, if a researcher knows that Fred had a brother born in 1972, and a mother who died in 2001, there are only a limited number of IDs in the database who match. Even with aggregate statistics such tricks can be played, and have been a topic of research since at least the 1980s.

    Its all a minefield of ethics, logic, and statistics, and if we are ever to get it right, people need to know the issues.

  5. This topic came up in a college Health and Wellness class, and a few parents attending actually spoke against vaccinating children. To them, the decision to not vaccinate was their way of “sticking it to the man”, and was more about an illusory sense of empowerment than actual concern for their children’s health.
    When I asked about modern day plagues such as polio that are no longer of concern thanks to vaccines, they simply brushed off the results. One parent told me that vaccines “were safer in the past”. Another replied that “vaccines were needed then, but not now(!)” David W was correct in saying that articles like this simply preach to the choir. The true task is in communicating the urgency of this issue to people who trust an intellectually vacuous blond over decades of empirical data.

    • In reply to #6 by Matthew Lehman:

      This topic came up in a college Health and Wellness class, and a few parents attending actually spoke against vaccinating children. To them, the decision to not vaccinate was their way of “sticking it to the man”, and was more about an illusory sense of empowerment than actual concern for their chil…

      I think some of these people need a trip to Africa to witness children dying of meningitis and measles outbreaks, or a trip to Pakistan where they can see children crippled by polio as a result of that country’s retarded religious paranoia about UN vaccination programs. Of course, people in denial about the benefits of vaccines are often in denial about a lot of other things. They might just brush such horrors off as “it only happens in THOSE countries, not in America. White Americans are God’s chosen people.”

    • In reply to #6 by Matthew Lehman:

      “sticking it to the man”,

      Just tell them they are “sticking it to the baby”, someone else’s baby! I guess they will just say whooping cough is caused by unbalanced chakras or Big Pharma.

      Michael

      • In reply to #10 by mmurray:

        just tell them they are “sticking it to the baby”, someone else’s baby! I guess they will just say whooping cough is caused by unbalanced chakras or Big Pharma.

        I suppose it’s a variation on that well known saying!

        “The government has given guidance and passed laws, because it thinks we are too lazy and incompetent to research information, and we are unfit to make informed decisions – so now we will defy them, to prove it beyond all reasonable doubt! – That’ll show ‘em!”!!

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