There is an expiration date on medical privacy
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.
---- 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]
- Want to trust, anyway?[back]
January 23rd, 2008 at 19:15 EET | Categories: Health, Privacy, Science, Search |
Track comments.
You can skip to the end and leave a response. Pinging is currently not allowed.
December 28th, 2009 at 19:26
huge violation of privacy as insurance companies can use this to increase policy rates for the children of these children;
February 22nd, 2010 at 12:31
I admire writer that wrote remarkable articles that are really useful to the readers and bloggers like me for you teaches many lessons and provide endless useful information. Hope to read more from you guys and Thanks a lot for the post! I look forward for your next post.
April 1st, 2010 at 5:04
Thanks a lot for the post!
April 15th, 2010 at 7:23
Nice post. thanks for creating and sharing.The database is supplemented by a collection of scanned images from 14 volumes of patient case..anyway hope doctors and government will manage it.
April 21st, 2010 at 16:19
I would like to thank you for the efforts you have made in writing this post. this is nice idea for providing us information about medical privacy and their expiration.
April 29th, 2010 at 6:02
I really love this article! Thanks for sharing! ;)
May 19th, 2010 at 4:17
I just can’t resist to be amaze with a writer who are truly exceptional for they articles that are really interesting to a blogger like me. I will not spend time reading an article when the topic is not important or has no the significant. You did a good job for always providing relevant and meaningful article.
June 2nd, 2010 at 15:44
Insurance companies routinely get records of most of the prescriptions pharmacies sell, and they can reconstruct much of your medical history – a history that is otherwise legally supposed to be private
June 23rd, 2010 at 12:59
I completely agree with your post. I really like your post very much. I think that if the disclosure of private information held, the more people get annoyed or concerned when it comes to children. It can be much more sensitive, but it is always the case.
July 15th, 2010 at 11:03
Well I do hope they stick with their promises not to divulge any vital information. But I guess there are children who wouldn’t want others to see what diseases they have in their lineage. It’s more of a personal and family matters.
July 27th, 2010 at 16:36
Very cool! Nice topic and post, as we were just talking about what things can happen in the medicine industry. Also we will submit your article to our social network and our twitter, thanks and please post our comment, as we will put a link as well on our blog to your article.
July 31st, 2010 at 9:54
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.
August 7th, 2010 at 11:13
I really like your post. Thank you very much. I think if the private information held openly, more and more people feel angry or care for children. It can be more sensitive, but it is always so.
August 12th, 2010 at 10:32
For which ,I think that’ll be more There is criterion,an expiration date on medical privacy—-highly recommend.
August 12th, 2010 at 11:12
Owo! Nice post.From the article I learn more things.Thank you for sharing.
August 17th, 2010 at 10:38
Manolo blahnik pay special attention to the woman put his shoes on the attitude of the beautiful appearance shoes, but still very exquisite heels on line, Manolo shoes will immediately make feet become elegant small.Most marriages don’t last long, Manolo can with you forever.
August 21st, 2010 at 5:00
Americans support both protecting the privacy of medical records and encouraging medical research. Thus, it is not surprising that a move to change practices in these two areas has generated attention and comment.
August 24th, 2010 at 3:29
If you find that your vitamins are expiring before you are able to finish them, you would be better off buying them in smaller quantities. You want to get all of the vitamins and minerals from your supplement, so take them as instructed before they lose their effectiveness.
August 28th, 2010 at 5:27
Kidney disease is developed in many means. In diabetics, it’s acquired simply because the kidneys worked too hard to filter out the sugars and starches and were not able to get rid of waste products from the blood. Eventually, just like any organ that is overworked, they shut down.
August 31st, 2010 at 6:23
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.
September 3rd, 2010 at 6:24
I think your blog post was secretly a awesome beginning to a potential series of blog posts about this topic. So many people pretend to comprehend what they’re talking about when it comes to this topic and generally, very few people actually get it. You seem to grasp it though, so I think you ought to run with it. Thanks a lot!
September 4th, 2010 at 5:12
Ideology is critical in any insurgency, not for the content of the message applied, but rather for the ability to take a position that speaks to the masses in a manner that motivates them to join, and that also takes positions that the opposition is either unwilling or unable to accept.
September 6th, 2010 at 5:49
NOBODY has yet come up with a single adequate definition of ideology, and this book will be no exception.