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Who owns patient's data?

December 17, 2019 - by Parul Saini, Webmedy team


Gone are the days when doctors recorded their patient's data in different color-coded files and used to update them by hand.

Now nearly 85% universally physicians are using EHRs (Electronic Health Record). Furthermore, 90% of small, medium and large rural healthcare are using EHRs.

So one of the main questions arises is 'who owns the patient's data?'

Does your doctor own it? Health care? Or some third party?

Commonly the control of data belongs to the person or the company who produced that information.

Is it not possible for patients to own hold their health data? Ultimately, this data contains their personal information and it was produced for them - then why shall someone else own it?

Every country has some rules regarding the ownership of the patient's health data. In the United States, New Hampshire is the only state that exceptionally gives ownership of their health data to patients. Some states don't have any laws that describe guardianship of patient's data. Further, now mostly health care grant patient access to their information through the patient portal. It contains all information about patient health in easy to absorb form, prescriptions, and medications, discharge summary and test results.

According to federal and state laws, patients have rights over their medical records. Anyhow, that data is caught and recorded in any electronic or written form (ex. Chart or electronic file), and as the health care service provider has ownership over the media where health data is documented and stored, the service provider gets the custody of the health data. Practically, the health care provider turns into the legal guardian of your health data and gets hold of proprietary rights related to that health data.

If you don't have any rights over your medical data, then what does it means by 'patient's data ownership'? Well, it's the idea of having access and authority over your health data that one should concentrate on.

Patients should have the right to look at their health records and request to change the information. Patients also have the right to choose the form in which they want their records - like some want an electronic copy, others may want to download the record from the patient portal. This is very important as it grants patients the ability to access their medical records and encourages patients to have active participation in their health and wellness. Patients become more aware and engaged when they have access to their medical records and engaged patients are healthier patients.

National government's role in Patient Health Record

Several countries are now looking at maintaining a central repository of patient health records.

In July 2012, My Health Record (MHR) Australian electronic PHR system was introduced. It is an evolving system and around 27% population of Australia has registered to use MyHR.

MyHR has two main components.

First is a website www.healthrecord.gov.au, which have all information for consumer composed by Australian Digital Health Agency or Common Health Department.

The second component is PHR; the data is uploaded to a particular patient's record from different sources:

  • A health care provider can upload documents (report, health summary)
  • Government agencies can add information and benefits scheme, prescriptions and medications
  • Registered patients can enter personal details, medications, and allergies (concluding appointments and medical power of attorney)
  • Healthcare awardee or their attorneys can have the authority to read and upload data to their records. They can hide documents in their records from the scene of the health provider and can't delete documents added by other parties.

Registration can be done in different ways - email, face-to-face at the government center or through the website. myGov website is an Australian website that offers registered users to access services of government just by one login. Despite the method of registration, online access to the record is through the website.

Physical health data belong to your healthcare provider, but the personal information inside it belongs to you. Having guardianship and access to your data helps you to make sure that your health data is correct and safe. It enables you to be more engaged and healthier. Last but not least it allows you to manage your health record as a digital resource that you can give away for research or sell for financial benefits. In the end, it is your body and your information.

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