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Who’s data is it anyway? The journey from buying to selling your own health care data …

Patients have a lot to offer. Not least to researchers. Research data is big business these days. Anonymised data from large numbers of patients is exploited to develop new concepts for future research studies. Patients’ hair, blood, saliva, stool and urine are used to help development of new tests to diagnose cancer, chest infections and other conditions.

In the research setting we consent patients. We ask for permission of patients to take part in research. Patients get a form to read that explains the research, they are then given time to think about whether they want to take part in the study. Then they sign a form, give their samples, answer some questions and might get contacted again a few months later to see what happened to them. Sometimes patients who take part in research get some money for the trouble of answering questions and coming to the research clinics. The payments have to be appropriate for the trouble that they are going through. Payment should not be an incentive to make patients do something that they would have otherwise not have done. Patients are not meant to take part in research for money.

Data that is collected in large data bases of the health service is of mayor interest for research and policy makers  and not just in the United States ( do patients who take a certain drug get admitted less often to hospital? Do patients who’s spouse is living with them have less need for visits for primary care. By linking databases from a hospitals, primary care and social services we can learn how groups of patients are likely to behave, what there needs are and where they are running into problems. This can then help to design studies that test new treatments or more effective ways to support patients.

Now let’s assume I am coming to hospital. I am quite ill. Everybody is trying their best to help but law and behold something does not go quite right. I am left with a chronic health problem. I would like to know whether anything happened that should have been prevented. For this I will have to look into the records from my hospital stay. I can request them, or to be precise I can request a copy of my record. And I will have to pay for that copy.

If you think that this makes no sense then you are not alone. In the US the opennote movement has enabled thousands of US patients to have access to their own records ( Trials report better satisfaction with healthcare and better compliance with medication. Many patients have since contacted their physicians to point our factual inaccuracies, especially in the way that medications are documented. Patients are thus starting to enhance patient safety.

But in Iceland things might go even further. ( offers patients a download of their record with the option to sell it on! So patients could sell their personal data set to a company that is interested in their condition and that would then buy similar data from many other patients with the same condition.

And of course we are now worried: the data is my data and I am holding it. What if somebody steels it? That could be a  major problem! And in fact my data is already being stolen: on facebook, twitter, instagramm data is extracted, evaluated and sold on. My data is used to target me with relevant and irrelevant services. But I am not currently being paid for my service. I get permission to use websites free of charge, but clearly: ‘there is no such thing as a free lunch’. I can see why the Huffington post thinks that ‘data has an image problem’ (

On the flip side there are massive opportunities: Research is crucial to improve my health prospects for my future. I might have conditions that need further studying. My data becomes my capital to contribute to this. Sharon Terry from the Genetic Alliance has shown how to do this at scale ( She and her husband needed to understand a serious genetic disorder of their children. But researchers that she met seemed to be more interested in competition with other researchers then the health of her family. In response she set up a company to bring patients together to sponsor research, in essence selling their data. They achieved unbelievable breakthroughs in the understanding of rare genetic conditions that require strong multi-disciplinary teams. I can understand why she encouraged us to ‘be collaborators in our own health’.

So instead of paying to see the data from my hospital records, I can now own, use, and share my data for better care of everybody. Waow! This will need getting used to.

So what does this mean for my future healthcare records:

Should for profit healthcare organisations have to pay for access to patient data that they are using for business optimisation?

Should I be able to donate my healthcare data  to a charity of my choice?

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