How to Keep Your Private Health Data Private

personal health record

A new proposal can provide an opportunity to change the health privacy law, and what you can do to achieve an ideal policy like that?

The year 1996 was the year where Congress passed a landmark health privacy law. Although there was no Fitbit, Apple watch or Facebook support groups of patients posting their medical history there was this law which was protecting the health data of a million patients. The health data was limited between the doctor and the patient.

How to protect your health information?

More than two decades later, the HIPAA (Health Insurance Portability and Accountability Act) which was first passed by Congress in 1996 was still in place and followed religiously. Despite this law protecting our medical privacy, it is time to have our inadequate health data to be protected by a proper health care system thus there is an opportunity we need to avail to revamp it all up.

Experts agree that having a federal data privacy law makes more sense than ever as it has to mix state and sector laws.

Kayte Spector Bagdady a bioethicist I the University of Michigan said;

Data travels freely across the state and along the continental lines, so a patchwork of laws by the state does not make any sense”.

To avoid the trouble in an institution, you need to follow the policy of the state in the most restrictive laws. The result would be of California where there are new and tough data privacy laws which should be made essential in the national policy.

How does HIPAA Control Health Data Privacy?

HIPAA has played a critical role in protecting patient’s data from wrong hands. In some cases, the health information itself has lead to discrimination like life insurance premiums. In some situations, privacy is valued, but in many, it is not.

HIPAA blocks the medical providers like nurses, doctors, and pharmacies to give the protected health data to third parties. As per Pamela Hepp who is a co-chair at Cybersecurity and data privacy group firm Bunchan Ingersoll said;

“Protected health information means the amount of information which is identifiable and is related to the health and medical treatment of the patient.”

You would not like to have a gossipy doctor or an office secretary that would tell everyone that this patient is diagnosed with cancer or is under the treatment of a disease. Before the HIPAA law it was far common, as Margaret Riley a health expert at the University of Virginia says;

“It is hard to overstate cultural change which HIPAA brought, but it is a good and a drastic change.”

HIPAA is all about the health data care and more than the health data. Experts say that the law focuses on the custodian data and rather on the kind of data which has lead to loopholes.

It won’t let a pharmacist’s share the oxycodone prescription but will leave an online trace of a user buying something related to a knee brace. The tech companies that work in the health sector are not health companies “officially” just like Fitbit or Apple making fitness apps have HIPAA deliberately and have set up their camp at the border of the health-related information to flout the legislation.

The enormous amount of data that we hold and generate is exciting information for researchers and doctors to improve the new treatments and insights about the disease. The key question today is how to balance the competing interests of data privacy in the age where online security threat is at large,

Riley argues that privacy is important, but if our focus shifted on the idea to control it for the individual, then our research will suffer”.

What could be an ideal privacy law, and how does an ideal privacy policy would like?

How should we visualize About Our Health and Privacy?

Since it is highly unlikely to overhaul health privacy which would compel tech companies to read electronic data and records, the notion that somebody will get up and say that Senator X is trying to expose the health data would just be too easy to run an ad however we’d be surprised to see a new policy which would come out in the open and flow through the electronic health records in a way like we don’t see it now.

Laws like American Disabilities Act (ADA) or the genetic information and Nondiscrimination Act (GINA) and the patient’s protection and affordable care act (PPACA) are there to prevent various discriminations on medical data. However, there are loopholes;

  • GINA and ADA do not regulate life insurance
  • GINA doesn’t protect against long term insurance

If someone is taking a DNA test and find out that he/she is likely to get a stage one Alzheimer, then this information could be shared with the long term insurer who will then change the price of the plan or even deny the coverage whatsoever.

Shutting these loopholes once and forever will not only make the laws leak proof but will also prevent undue harm to the patient medical data.

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