Have you ever been to the doctor and had to fill out a form with all your personal information? Or have you ever had a test done and wondered who can see the results? These are important questions because our health information is private and we want to make sure it stays that way.
But what if I told you that there is a lot more to our health information than what we see on paper or on a screen? What if I told you that there is a whole world of data that is being collected, stored, and shared by new technology every day? And what if I told you that this technology can do amazing things, but also pose serious risks to our privacy?
This is the world of big data and artificial intelligence (AI). Big data is a term that describes the large amount of data that is generated by various sources, such as social media, sensors, cameras, and devices. AI is a term that describes the ability of machines to learn from data and perform tasks that normally require human intelligence, such as recognizing faces, understanding speech, and making decisions.
In this article, we’ll explore how we can protect our health information privacy in the age of big data and AI. We’ll learn about a law called HIPAA, which helps keep our health information safe. We’ll also talk about some of the challenges we face in keeping our information private and some ways we can make it better.
What is HIPAA?
HIPAA stands for the Health Insurance Portability and Accountability Act. It’s a law that was passed in 1996 to help protect our health information. HIPAA sets rules for who can see our health information and how it can be used.
There are two main parts of HIPAA that help keep our information safe. The first part is called the Privacy Rule. This rule says that certain people and organizations, like doctors, hospitals, and insurance companies, have to keep our health information private. They can’t share it with others without our permission.
The second part of HIPAA is called the Security Rule. This rule sets standards for how our health information is stored and protected. It says that people and organizations have to use things like passwords, firewalls, and encryption to keep our information safe.
HIPAA helps us control who can see our health information and what they can do with it. For example, if we go to the doctor for a check-up, the doctor can only use our information to treat us or bill us. They can’t sell it to a company or post it on social media without our permission. If we want to see our own information or share it with someone else, like a family member or another doctor, we have the right to do so.
HIPAA also helps us know what’s going on with our health information. For example, if there is a breach or an incident where someone sees or uses our information without permission, we have the right to be notified. We also have the right to file a complaint if we think someone has violated our privacy rights.
Is HIPAA enough?
Even though HIPAA is a good law, it might not be enough to protect our health information in the age of AI. New technology can collect, store, and share a lot of health data. This can be good because it can help doctors take better care of us. But it can also be risky because it means more people might be able to see our information.
Some experts say we need new rules to make sure our health information stays safe. They say that HIPAA was made before we had things like big data and AI, so it might not be able to protect us from all the risks.
One of the risks is that new technology can collect more types of data than what HIPAA covers. HIPAA only protects health information that identifies us or can be used to identify us. This is called protected health information (PHI). PHI includes things like our name, date of birth, diagnosis, treatment, and insurance information.
But new technology can collect other types of data that may not be considered PHI but still relate to our health. For example, wearable devices like smart watches or fitness trackers can collect data on our heart rate, blood pressure, sleep patterns, and activity levels. Mobile apps like health trackers or symptom checkers can collect data on our symptoms, medications, or habits. Online platforms like social media or search engines can collect data on our interests, preferences, or behaviors.
These types of data may not identify us directly but they can still reveal a lot about us. For example, someone who knows our heart rate or blood pressure may be able to tell if we have a heart condition or are stressed out. Someone who knows our symptoms or medications may be able to tell if we have a disease or are pregnant. Someone who knows our interests or behaviors may be able to tell if we are depressed or addicted.
Another risk is that new technology can share our data with more people than what HIPAA allows. HIPAA only allows people and organizations that are involved in our health care or payment to see our information. These are called covered entities and business associates. Covered entities are health care providers, health plans, and health care clearinghouses. Business associates are entities that perform certain functions or activities on behalf of covered entities that involve the use or disclosure of PHI.
But new technology can share our data with other people and organizations that may not be covered by HIPAA or may not have our best interests in mind. For example, technology companies like Google or Facebook may collect our data for their own purposes, such as advertising or research. They may also share our data with third parties, such as other companies, governments, or hackers. These people and organizations may not respect our privacy rights or may use our data in ways that harm us.
How can we improve health information privacy?
There are a few ways we can make sure our health information stays private. One way is to be more open about how our data is used. This means telling us what kind of data is being collected, who can see it, and how it’s being protected.
Another way to improve privacy is to have stronger rules for people who break them. This means having bigger fines or other punishments for people who don’t follow the rules.
We can also use better technology to keep our data safe. This means using things like encryption to make sure no one can see our data if they’re not supposed to.
One example of being more open about how our data is used is the California Consumer Privacy Act (CCPA). This is a law that was passed in 2018 to give consumers more control over their personal information. The law grants consumers the right to know what personal information is collected, used, shared, or sold by businesses; the right to delete personal information held by businesses; the right to opt out of the sale of personal information; and the right to non-discrimination in terms of price or service when exercising these rights.
One example of having stronger rules for people who break them is the Health Information Technology for Economic and Clinical Health (HITECH) Act. This is a law that was passed in 2009 to enhance HIPAA by increasing the penalties for violations, requiring notification of breaches, and expanding the scope of enforcement.
One example of using better technology to keep our data safe is encryption. Encryption is a process that scrambles data so that only authorized people can read it. Encryption can help protect our data from being stolen or hacked by making it unreadable to anyone who doesn’t have the key to decrypt it.
Ethical Dimensions of AI in Healthcare
As we think about how AI can be used in healthcare, it’s important to consider some of the ethical dimensions of this technology. These include questions about whether AI is being used for good purposes, whether it respects the rights and dignity of individuals, and whether it is fair and equitable.
One ethical principle that is important when using AI in healthcare is beneficence. This means ensuring that AI is used for good purposes and that it maximizes the benefits and minimizes the harms for patients, physicians, and the health care community. For example, AI can be used to improve diagnosis, treatment, prevention, and research in healthcare. But it can also pose risks such as errors, biases, breaches, or misuse.
Another ethical principle that is important when using AI in healthcare is respect for persons. This means ensuring that AI respects the dignity, autonomy, and privacy of individuals and that it does not violate their rights or interests. For example, AI can be used to enhance patient engagement, empowerment, and education. But it can also raise concerns about consent, control, and accountability.
A third ethical principle that is important when using AI in healthcare is justice. This means ensuring that AI is fair and equitable and that it does not discriminate or create disparities among different groups or populations. For example, AI can be used to increase access, efficiency, and quality in healthcare. But it can also create challenges such as transparency, explainability, and trust.
By considering these ethical dimensions carefully, we can help ensure that AI is used in a responsible and beneficial way.
Conclusion
In this article, we have discussed how HIPAA may be inadequate for protecting health information privacy in the age of big data and AI. We have explored some approaches that may be taken to improve privacy protections, such as being more open about how data is used, having stronger rules for people who break them, and using better technology to keep data safe. We have also considered some ethical dimensions of using AI in healthcare, such as ensuring that it is used for good purposes, respects the rights and dignity of individuals, and is fair and equitable.
Looking to the future, there are several implications and recommendations that can be drawn from this discussion. First, more research is needed to understand the impact of new technologies on health information privacy and to develop effective solutions. This research should involve collaboration among a wide range of stakeholders, including policymakers, regulators, researchers, developers, providers, patients, and others.
Second, more education is needed for health care professionals and consumers to raise awareness and understanding of privacy issues and challenges. This education should include information about existing laws and regulations, as well as emerging technologies and trends.
Finally, as a bioethicist, I have witnessed how technology has transformed healthcare and how privacy has become a pressing concern. As a person who has experienced health issues myself, I have appreciated how technology has helped me manage my condition and improve my quality of life. And as a Christian, I believe we are called to be co-creators with God to bring about the common good.
I hope this article has sparked your interest and curiosity on this topic. I invite you to join me on my journey by sharing your thoughts with me on Twitter or by commenting below. Together, we can work towards a future where our health information is protected and our privacy is respected.