Saturday, 26 October 2013

Using patient data for research

How do you feel about your anonymous medical records being used for clinical research? #MSBlog #MSResearch

"Some of you who are interested in big data and use of medical records for research will find this article of interest. It has implications for MS research as most clinicians are now collecting outcome data on people with MS. Should we be allowed to use this data without consent? You may be aware that the NHS has opened up its data for all to use; you can purchase anonymised data for research. I have recently seen health utilization data pre and post starting a DMT that a pharmaceutical company had purchased from the NHS. The data showed that MSers on a specific DMT used less healthcare resources, supporting the cost-effectiveness of the treatment."

"How do you feel about your data being used for research and sold to third parties for research purposes? Some people state that this is unethical? I am not sure it is. The underlying principles of contemporary medical ethics are threefold; (1) to prevent study participants from harm, or potential harm, (2) to protect personal data and (3) to obtain informed consent. As long as we uphold these principles and get approval for the study via a formal ethics and a peer-review process this should be fine. This is what we call self-regulation. We have to remember what we are doing the research for; to hopefully improve the lives of MSers. What do you think? Please have your say by completing the survey below."

Ewen Callaway. UK push to open up patients’ data. Nature 502, 283 (17 October 2013) doi:10.1038/502283a.


...... In August, posters began appearing in doctor’s practices across England, urging patients to say yes to their medical records being used for scientific research — or, more precisely, not to say no.....

...... The move, now gathering momentum, is part of a campaign by the UK government, alongside major research funders such as the Wellcome Trust in London, to convince a sceptical public to share their health details with researchers, through a system in which patients must expressly opt out. Privacy advocates are encouraging them to do just that.........

..... The government’s plans are part of a shake-up of health data in the National Health Service (NHS) in England, the world’s largest public-health system, that cares for about 53 million people. Following reforms made in April, it will in the coming weeks begin radically changing the way it handles patients’ records. This will involve establishing a central repository to connect hitherto disparate electronic data from general practitioners’ (GP) practices, hospitals and disease registries.......

....... According to some proponents of the plan, patients have little reason to opt out. “People think their records are being shared much more than they already are,” says Nicola Perrin, head of policy at the Wellcome Trust, the UK’s biggest funder of biomedical research. She worries that the public in England have not been adequately informed about the benefits of records sharing, such as improved health care, nor about measures intended to protect privacy. “I think there is underlying support for it, provided one can explain that there are safeguards, and that it isn’t your most personal secrets that researchers want to get,” she adds......


  1. While we have "protections" here in the U.S., they are far less effective than we pretend. I've done some work with databases, and to put it simply true anonymity is darn near impossible.

    At my work recently, Paul Ohm gave a presentation about "privacy." He was the outgoing head of electronic data security for the Federal Trade Commission. In it he talked about the gov. of Massachusetts signing a bill allowing all medical records to be compiled and "stripped of personally identifiable information" so they could be used for outcomes research. Long story short, the Federal Bureau of Investigations was at a graduate students house 2 weeks later because she had sent him his complete medical history with every diagnosis ever received, every prescription ever written, etc. That was in the early 90's. Have computers gotten less powerful in the past 20 years? How many times have you hit accept on a user agreement on-line? He estimates it would take 1,000 hours for every man, woman and child in the U.S. to read the ones we agree without reading.

    There is no absolute privacy and hasn't been for decades. If it hasn't hurt me yet, I'd like to think some good research should come of my records being open. I wrote about his presentation at my work:

    or you can google Paul Ohm and look at his work.

    for moderators, please feel free to edit links out or references...or tell me to do so and repost.

    Thanks, I love this blog. I have found little like it from U.S. sources.

  2. Which DMT resulted in MSers using less healthcare resources?

  3. Are our medical records accurate? It is all down to interpretation. It depends what is called a healthcare resource, are DMTs free? Are they cheap? Are patients monitored? I wouldn't want my records used as they have so many errors. I spend time trying to get them corrected.


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