Digital transformation and advancement has caused disruptions in many sectors, including data collection. Initially, data collection was fully manual, which meant files upon files.
Where files are involved, access to one’s data means physical presence and physical presence doesn’t guarantee access. In the cases of adverse health situations, where access to data means saving a life, restrictions to access means one life lost.
Begs the question, do you know you have a right to access your health data? Or rather, do you even know how your data is collected, how it is managed, where it is stored, how it is used or how it is disposed of?
In the present age, where data collection is digitalized, a lack of proper health data governance systems means a risk of compromising people’s privacy. How? You may ask. When crucial information about one’s health condition, for instance, leaks, that opens them up to victimization.
Practically speaking, Tiktoker Brian Chira is in court partly because of a data privacy breach. He bullied Azziad Nasenya online and went to the extent of putting her in harm’s way by putting her contact out there. Azziad is a public figure, and her contact being in public means a lack of privacy. Malicious people can literally use her contact to track her down.
Chira might have gotten Azziad’s contact from Azziad’s connections, who are not necessarily in the health sector, but this is to tell you that without proper health data governance, the people who collect your health data might end up being the people that sell you out to bullies.
Reminds me of a time when I paid a visit to a Mental Health facility, and one of the nurses was so quick to fill me in about a particular prominent person who visits the facility quarterly to collect medication for her mental illness.
The nurse might have shared the information in good faith, but in a case where the patient didn’t give the go-ahead, that is a breach of data privacy warranting a lawsuit.
Don’t wait to be on the receiving end to feel the need for a proper health data governance system. It doesn’t matter that you haven’t visited hospitals in many years. The fact is, sooner or later, you will need a doctor’s attention in a hospital, and your data will be collected.
What if that time comes when your quest for a proper health data governance system has been fulfilled? Won’t you be confident in giving out your data because you are assured that it will be safe or go to proper use?
Join the My Data Our Health campaign and let your voice be heard!
