We are on a hot topic: "Nothing will be as powerful as a patient-powered data liberation movement".

After reading a tweet from the Harvard Med Schooland the corresponding link where Prof. Isaac Kohane discusses the potential of surveillance and patient-powered data, I get more and more convinced that the time has arrived for a revolution in the approach to the use and safeguard of medical records.

In his article, Prof. Kohane estates that the the "vast majority of your health care data remains unused, discarded and ignored" and I would add that this data is scattered, if not lost, among multiple providers.

Even in those cases where a significant amount of data is digitally stored, this data sits idle when it's been shown than it could be applied today to improve the delivery of health care to individuals and  to the advance of medical science.

But if the technology is mature enough to enable the analysis of such massive data and it has been proved that  keeping an eye on health care records could help in so many ways, what’s preventing us from such endevour?

Privacy is probably the main concern? I'm sure a properly protected database is at as safe as the safest  room where physical documentes have been to date  under custody at hospitals. The point is in the digital realm, once the back door opens tons of data can be taken effortlessly and this is a real risk.

Imagine we could solve the safeguard of data.  Even then,  not everyone would agree in letting a third party to  use his personal records to advance biomedical care and science. Therefore individuals have to be able to opt out or opt in, and in the latter case to select and isolate pieces of data he wants to exclude from the scientific scrutiny. 

In a practical system, where inviolable protection is difficult to guarantee ( otherwise there would be less leaks in the intelligence services )  informed consent for data-sharing would be needed and it should be madecrystal clear what the risks are of accidental or malicious disclosure and also  substantial legal penalties for anyone abusing your data.

However, I fully agree with  Prof. Kohane that, unbelievably "Perhaps a bigger obstacle than privacy is the parochial attitude that treats patient data as belonging to particular institutions, from hospitals to health insurers to vendors of health care information systems". 

As patients we have the right to get a  copy of our own data, but the reality is that in general this right is not reinforced  healthproviders with policies of their own. And sometimes the best we can get is a printed hard copy of the original record.

  

The sad outcome is that due to fragmentation, inproper labelling or storage, information of unfathomable value is being lost and this is something our society cannot afford.

Many things are required to revert this situation: 
• Political support is needed for public policies to promote and enable  sharing  our data for research and analysis with appropriate security measures.
• Actors in the Healthcare industry have to understand this is a win-win situation.
• Citizens have to understand the great benefit of opting in versus being out.

Standarized open and safe access to personal data : a win-win scenario