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Why no one should be opting out of My Health Record (MyHR)

By Saeed Khan - posted Wednesday, 25 July 2018


Building an electronic health record for all Australians has been a long hard slog. Countless numbers of challenges such as legislative, funding, industry, privacy, security and practitioner resistance had to be overcome to get to where we are today. For those of us working in the health technology sector, it's a no brainer to have a cartelised source for all patient health data regardless of health provider or practitioner. Traditionally, doctors and hospitals have resumed ownership of patient data and resisted sharing it for commercial and privacy reasons often to the detriment of a patient. Patient data in public and private health settings has long been separated due to lack of a common technology platform and much needed interoperability. Currently, much of our health data is spread across public and private hospitals, various GPs, specialists and allied health silos. My Health Record is a government attempt to provide a secure and centralised source of patient data that can give patients control of their information and securely facilitates building and sharing important health information.

Privacy & Security

Like any other online platform, the MyHR system is not perfect security concerns are valid. We have faced similar security and privacy concerns with online banking, online shopping, social media (Facebook, Google, and Twitter etc.) as well mobile devices and operating systems. Having been personally involved in digital health for the past decade, I can tell you that security and privacy is of paramount concern to those working on MyHR. Despite the security hysteria, the system, previously called PCEHR (Personally Controlled Electronic Health Record), has not seen a security breach over its initial five years.

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However, to put this into perspective, currently our health information is spread across many different public and private providers from hospitals, including GPs, pathology, pharmacies. Except for a level trust in the health system, I have no idea how safe and secure is my health data with all these providers. Only trusted health professionals such as GPs, specialists, nurses or pharmacists can upload information to MyHR. Health data may also be added by hospital staff, some participating pathology labs or diagnostic imaging providers, and allied health professionals that are already part of our care circle. Imagine having your data in one place and not having to explain your health history every time you see a different provider. This would be a great relief particularly to a growing aging population with chronic health issues.

For those who have not signed up and are worried about their lifelong medical history to end up in MyHR worry not. It will carry your two years of previous Medicare data when you log-in and older medical reports, tests and scans will not be automatically added to your MyHR. You can remove this information once you log in.

Patient Control

One of the most understated potentials of MyHR is patients' ability to view and control their own health data. While MyHR's current interface is less than perfect, users are able to decide what information is shared. If anything, we all need to stay in and make MyHR better and more patient-centric in coming years. Imagine a level of control at your fingertips to manage your MyHR including alerts when an update is made by a provider, requests from practitioners to share information, new studies added etc. Potential is unlimited.

Secondary Use

Finally, there has been some noise about the secondary use of MyHR data in the mainstream media. In my view the framework is a rather cautious start to set the scene for a future secondary use. It would be a few years before MyHR de-identified or identified-by-consent data is meaningful for secondary research. While de-identified use is proposed without a person's consent, this will be for a greater public health benefit only and does not include insurance companies.

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Again, for me public benefits outweigh privacy concerns as the cost of clinical trials could come down; a major hindrance in developing new cost effective treatments. I do understand and respect the fact that not everyone will be willing to share their data for secondary use. You can read my analysis of the Framework here What's in the framework for secondary use of MyHR data?

Stay or Opt-out?

I opted in quiet early and will be staying in. I am also very excited about the future possibilities around MyHR and how it might improve health outcomes for all Australians.

If any of you end up opting-out, I understand. But don't worry you can recreate your MyHR anytime in the future L

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About the Author

Saeed Khan is a writer, diversity advocate, a former Deputy Chair of the Ethnic Communities Council of NSW and a former Treasures of the Federation of Ethnic Communities Council of Australia (FECCA). Twitter @saeedahmedkhan

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