We live in a world and a society filled with millions of data sources, and information is collected about us every day, with or without our knowledge. It is so common that we rarely think about it, and we happily sign online consent forms to view a web page, complete questionnaires for events, and update our profile databases online.
However, we need to be more mindful and cautious about who has access to our data and why they need the data. Understanding the objectives and how the data collection may benefit you is essential for you to sign or agree to data collection.
Misuse of Data
Totalitarian regimes have, for decades, kept a very close eye on people, to gain full control of the direction and political views of a country. It allows the leaders to decide how and what to spend money on, what people can do, and clamp down on dissident groups. Often people who object to control and who want to allow more democratic views. Groups of people who have the opposite view.
Many of these “governments” encourage people to turn in colleagues, neighbors, friends, family, and anybody they deemed to be working against the Government. It worked for the Stasi, and it is widely used in socialist and communist-run countries.
Even the news media, police, and medical services, and workplaces would support the regimes and ensure people were given the “right” information at all times.
Information collected about citizens, by agencies and other citizens, were assessed to determine if that person was a threat to the regime. The objective of this information gathering was, and is, to manipulate people to think or act in a certain way.
All under the umbrella of state security, protecting people from themselves!
It is unethical to use information against people and is not the way data should be used. We should use data to do good and assess the ‘healthy’ of society. We need to be mindful of who might have access to this data and where it is stored.
I think we would all agree that these methods are a direct attack on the freedoms people have. People’s rights should be protected, not abused, or attacked.
Medical Information Data
When it comes to medical records, we have to assess the need and purpose to track a patient’s health. Knowledge and medical details are essential to provide excellent care and treat whatever underlying symptoms or illnesses. With more information, the treatment will be targeted and more successful.
Most, if not all states, have a fairly open medical record exchange between healthcare providers within their own states. There is actually a federal requirement to share some medical information with the Department of Health, known as the RHIO. A system has been developed using FHIR technology to safely transfer and share information amongst the region’s healthcare system stakeholders.
Healthcare information is shared across the state, and sometimes outside the state, to improve the safety, quality, and efficiency of healthcare and access to healthcare.
Ensuring that medical providers have access to all information about their patients is essential to provide accurate care if you think about it. If your patient visited the ER department and then came to for a medical appointment, it would be important for the medical provider to have access to the ER records.
Medical information exchange is an essential tool to optimize the care and service to patients. I support this approach and happily share my health information with my doctors. The more information they have, the better care I receive. This was very relevant during my heart failure adventure. Multiple medical teams treated all had the same data and ensured that procedures or medication did not interfere with the overall treatment or health issues.
Tracing & Tracking
On the flip side, when Government agencies suddenly determine the need to trace people, then my tiny hairs on my neck start to tingle. And scarier, they may recommend installing a Bluetooth enabled app on your mobile device, which could potentially alert you if an infected person was in your close vicinity.
This was discussed and rolled out in some countries and states, mainly to combat the spread of COVID-19. It would generate a centralized data source, giving a more accurate and real-time view of the pandemic. Agencies could react faster to flareups, and people and groups could be isolated.
This is how conspiracy theories are born and fueled. People being traced and having their data exposed so the Government can monitor movements.
From an RHIO perspective, it is not hard to share the COVID-19 cases at the state level. Each healthcare center track COVID-19 through their electronic medical records system (EMR) and share this already. That is how we have these awesome web sites like John Hopkins, who track COVID-19. Medical data is shared and used sensibly.
To share data from a mobile app, you need to consent to share personal information and medical data, perhaps more than just medical data. By enabling Bluetooth, you are also enabling location services. How else would the app alert you of infected people around you?
This takes tracing and tracking to a new level. It has become a gamified, similar to the Pokémon, Walking Dead, and other mobile games that use your surroundings to build a real-time and location-aware interface. It’s pretty cool for games, but not for tracking people.
I find it disturbing to share personal health records with these apps and tracers, potentially giving them full access to investigate all your private/personal data. Once the app has been authorized, there’s, in theory, nothing preventing the app from gaining more data from other apps on your mobile device. Will they end up sending people to prison, forced quarantine/isolation, fines, etc.?
Think about it, you have online banking, text, phone, emails, cloud storage, social media, and photos – it can see who you have been in contact with.
Applying this level of insights and overreach, we are suddenly labeling and targeting individuals for contracting COVID-19. They are being excluded by society. Mocked and cornered. Some might even get evicted from their community. This is a path of no return. There will be other pandemics and critical incidents, and now we can micro-manage our citizens’ lives.
This reminds me of state-controlled extreme socialist-communistic countries and the Stasi from the old Eastern German regime. The Government, intelligence agencies, and perhaps private companies suddenly have access to your data.
These entities can use the data for good, which I hope is the purpose. Some will undoubtedly use it for more sinister or money-driven purposes. You will suddenly receive ads from shops in your area. You get fined by insurance companies for buying cigarettes, and criminals will find ways to hack into this vast pool of data.
Look how easy it is for many cybercriminals to gain access to corporate networks through phishing and malware activities. Once in, they can steal, destroy, or expose sensitive data. Security breaches are a regular and common occurrence, despite how much our IT heroes buy, install, and configure to protect the environments.
The problem is, who ensures that these tracers and agencies do not overreach their authority, and who ensures that people are not deprived of their privacy right?
While I support the need to treat COVID-19 and provide steps forward to reopen countries, this state control and overreach is a frightening move towards our freedoms. Thousands of jobs are being created to trace, track, and respond to “health issues” caused by COVID-19.
Our small/local businesses are struggling, the national economy is significantly impacted, corporations shuttering due to drop in, e.g., tourism, leaving millions of people unemployed.
Despite the economic downturn, these tracers have to be funded somehow. Taxes are increased, and states take on big debt to keep the tracking wheels turning.
Why do we, the people, not have a say in this approach? Should tracing and tracking not decide that we, the people, vote on before it is implemented?
We elected these twats. They work for us, so let them start earning their salary or get fired. Instead, the mismanage our hard-earned money, jeopardizes our economy, controls our movements, and using questionable arguments to justify their decisions.
Both sides are equally at fault here. They are politicizing a pandemic to generate fear, hate, and division; the news fuels these views even further.
We absolutely need to share medical data to ensure we get the best quality treatment for whatever medical challenges we are experiencing.
We need to monitor social networks and websites for malicious or hate speech, ensuring that people worldwide are safe from terrorism or criminal events.
We should absolutely find ways to combat and treat COVID-19, similar to how we developed treatments for TB, flu, mumps, etc. It will just take time.
We cannot allow people’s labeling and targeting and diving into people’s private lives using technologies. There are boundaries we should not cross.
I would not be surprised if we will be forced to get the COVID-19 vaccine, and it will be tracked. People who do not take the vaccine will be excluded.
Where do we stop and who draws the line?
My apology for the rant, but neither side of the local politicians provide much confidence in local leadership. No need to say, “it is unprecedented times” … we know. Just listen to people instead of coming up with these draft ideas. Skip mortgage payments for unemployed people and help small businesses get the money they applied for.