Archive for January, 2008

There is an expiration date on medical privacy

January 23rd, 2008

There are a lot of debates about privacy, and about the balance between privacy and research (or possibly privacy and anything else of utility that can be derived from the private information).

Of all the areas of privacy, one of those where people object the most to violations of their privacy is in health and medical information. You’d be very hard-pressed to find anyone willing to disclose diseases, health problems, and medical examination reports.

And when disclosure of private information occur, people get the most annoyed, or concerned, when it comes to children. It may involve a lot of over-sensitivity, but it’s still the case.

Well, now there’s a new service, for any interested researcher, or any interested Internet user with some free time and a little curiosity. A website that allows to browse a comprehensive set of complete and full, uncensored, medical records from a large hospital for children.

You can search and browse by the real full names of the children[1]. You can get the full diagnoses, what diseases the doctors found when examining these children. For some of the children you can get the full case notes of the doctors who checked the sick children. You can see what were the treatments and medication given to each of these children, and whether they helped.

And you can even get the full, and real, physical home address of the patients. The people who digitized the information on the site actually invested quite a lot to make sure that the addresses are correct and, for example, none of the street names would be misspelled.

Sounds lovely, does it?

So why isn’t there a huge outcry over it? A major violation of privacy and data protection laws. Not to mention children. And it didn’t even hit the news. Why?

Because the details are from 1852 to 1914. Meaning that youngest patients would potentially be 94 years old now. Certainly in no condition to care, or complain, if they’re even alive. Just some interesting past cases for research.

I’m sure their children won’t mind at all that mom’s chronic illnesses are online for everyone to see. Mom is dead, so there’s no point in keeping her secrets, right?

Welcome to Small and Special, the site showing you all the gritty details from the Great Ormond Street Hospital for Children, in Britain.

A unique database lies at the heart of the Small and Special website. It is based on the information contained in the In-Patient Admission Registers from Great Ormond Street Hospital for the period 1852 to 1914, which have survived intact. The Registers have been carefully transcribed and indexed to allow flexible and accurate searching of this important resource. Users can search for children by name (first and last names), age, sex, and address. Other searchable fields include date of admission and discharge, admitting doctor, outcome of treatment and subsequent referrals (if any).

The database is supplemented by a collection of scanned images from 14 volumes of patient case notes of the founding physician, Dr Charles West. The case notes, which cover a period between 1852 and 1874, contain a wealth of information on the treatment and management of sick children in the mid-Victorian period.

Some of the information is accessible freely. For the rest you need to register. But the registration is easy, free, and they don’t require that you’d prove (or even claim to be) you are a researcher, doctor, or anything.

And what does it say about the future? About my own medical records, or yours? We trust[2] in doctor-patient confidentiality. In privacy laws. In that even if the doctor has to share the details with insurance companies, none of them could, or would, ever just list everything on the Internet for the curious masses.

Anyone having these expectations of privacy about your medical and health records? Just wait about a hundred years or so, and we’ll see. We most definitely will see. Everything. Free for searching and browsing.

After all, our friends in Kingston University are still working:

This outstanding resource will be further enhanced by the inclusion, at a later date, of the surviving Registers for Cromwell House (the Hospital’s convalescent home at Highgate), from 1869 to 1910.

Amusingly enough, when you register to the site they have a privacy policy, and they clearly state they won’t share your personal details with anyone. Which is admirable, and I wish more online services would be so clear about their privacy policy. It’s just that, well, they’d keep my name and email secret, but don’t feel any problem with showing me the names, addresses, medical history, and diagnoses, of many many past-children who never thought to agree to release it.

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  1. Some of the names have been anonymised. This is a minority of them. I’m not sure what were the criteria to choose. And even for the anonymous ones, you still have a full home address, just not the name[back]
  2. Want to trust, anyway?[back]