In this post
- Unlocking the vault: Taking back control of our health data
- What we are building
- A (very) brief history on health data privacy
- Why address this problem
- How we will help individuals regain control
- Looking ahead
Unlocking the vault: Taking back control of our health data
Imagine for a moment that you have a personal journal. Within its pages, you’ve penned your deepest thoughts, emotions, and experiences. You cherish this journal and keep it locked in a vault, only sharing its contents with those you truly trust. Now, imagine if, without your knowledge, copies of this journal were being sold to strangers, its contents analyzed and monetized. You’d be outraged, right?
In many ways, our personal health data is like that journal. It contains sensitive information about us – our medical histories, diagnoses, treatments, and more. Yet, unlike the journal, this data is routinely shared, bought, and sold without our knowledge or consent. This is the reality we’re facing today, and this is the problem HealthConsent aims to address.
What we are building
At HealthConsent, we’re pioneering a privacy service that puts YOU in the driver’s seat. Our platform empowers individuals with the ability to control who, what, when, where, and how their private health data can be accessed and utilized.
Taking the initiative: We take pride in being the trailblazers, the very first organization offering a dedicated service that champions consumers in their quest to maintain control over their health data privacy. In a world awash with data, we’re here to ensure that your health information isn’t just another byte in the vast digital ocean.
A comprehensive account: Curious about where your data’s been? We request a thorough accounting of how and with whom your health information has been shared, shedding light on the journey your data has taken.
Setting your preferences: Once we’ve identified who has your records, we don’t just stop there. We actively reach out to these providers, ensuring they are well-aware and respectful of your privacy preferences.
Beyond the providers: It’s not just about the doctors and hospitals. Data brokers, health plans, and various other healthcare organizations are all part of the health data ecosystem. We make sure to communicate with them, reinforcing your privacy choices and ensuring they tread carefully when it comes to your data.
Opting out, the easy way: Don’t want your data shared? We’ve got your back. HealthConsent takes on the task of opting out of data sharing on your behalf, ensuring your wishes are followed to the letter.
Eternal vigilance: The healthcare landscape is dynamic, with new players entering and old ones evolving. We continuously monitor both healthcare providers and data brokers to make certain that your privacy preferences remain respected, no matter how the industry shifts.
Time is of the essence: Let’s face it – in today’s fast-paced world, time is a luxury. We save our customers the exhaustive effort and countless hours it would otherwise take to research, contact, and follow up with every organization holding their data. With HealthConsent, you can recline, relax, and know that your health data privacy is in expert hands.
A (very) brief history on health data privacy
A Blast from the Past: 1996, the Birth of HIPAA
Ah, 1996! A pivotal year in the world of healthcare and technology. While we were getting used to the screeching symphony of our dial-up connections and priding ourselves on AOL email addresses, a significant piece of legislation was coming to life: the Health Insurance Portability and Accountability Act, better known as HIPAA. Designed to protect our health information from prying eyes, HIPAA was the knight in shining armor in an era where ‘data breach’ sounded more like a sci-fi term than a daily headline.
Yet, as we navigated websites waiting for a single pixelated image to load or juggled those brick-sized cell phones, HIPAA was navigating uncharted waters, trying to ensure our health data stayed confidential. Fast forward to today: If HIPAA were a person, would it still be using a pager and wondering why no one’s faxed back? While the act was groundbreaking for its time, our tech landscape has evolved leaps and bounds. Just as we’ve upgraded from those early internet days, it’s time our approach to health data privacy caught up with the times.
Why address this problem
The rapid evolution of technology has transformed every facet of our lives, including how our personal health data is managed and shared. Yet, as we advance, our regulatory frameworks, like HIPAA, seem frozen in a bygone era. Introduced in a world where internet was still nascent and mobile phones were luxuries, HIPAA’s guidelines now seem like a relic, struggling to address the nuances of today’s digital health ecosystem.
While HIPAA was groundbreaking in its time, its provisions haven’t kept pace with the rapid technological advancements and the emergence of a burgeoning data broker industry. Reports, such as those from Health IT Leadership Roundtable and Joanne Kim, shed light on the alarming trend of health data being traded without patient knowledge.
And it’s not just about direct identifiers. In a world where data is the new oil, deidentification is no longer the impenetrable fortress it was once believed to be. Advanced algorithms can piece together the puzzle, turning anonymous data points into a recognizable profile. Deidentified data, which strips personal identifiers, has long been the veil behind which many data transactions occur. But the myth of deidentification is being debunked. With today’s capabilities, reidentifying someone from deidentified data is easier than one might think.
As if this wasn’t concerning enough, there’s a more insidious trend emerging. Our health data doesn’t exist in isolation; it’s being intertwined with other facets of our lives. Imagine a scenario where your health records are being linked with your credit rating, salary, religious beliefs, political affiliations, and even your shopping habits. The result? A hyper-detailed profile that goes beyond medical histories, diving deep into your personal and private life. It’s not just about a breach of medical confidentiality; it’s an invasion of your holistic privacy.
Yet, a prevailing myth persists among many of us. We trustingly assume that our health data, once shared with our doctor or healthcare institution, is safely tucked away. But the landscape of health data management tells a different story. As the HILR white paper unveils, beneath this layer of trust lies a sprawling and complex network of data exchanges, often operating unseen and unchecked. This intricate web results in our most personal information being accessed, shared, and sometimes even monetized without our explicit knowledge or consent, challenging the very essence of our initial trust.
It’s in this challenging landscape that HealthConsent emerges, driven by a singular mission: to empower individuals to remain the true custodians of their private health data.
How we will help individuals regain control
HealthConsent is not just a platform; it’s a movement. Our tools are designed to:
Educate: Awareness is the first step. We aim to shed light on the intricacies of health data exchange, equipping individuals with the knowledge they need.
Empower: With HealthConsent, individuals can set their privacy settings across their entire network of providers, deciding which entities can access their data, and for what purposes.
Demand Accountability: HealthConsent ensures that the entities individuals interact with are transparent with how health data has been shared, and in turn honor individual privacy preferences.
In the coming weeks, we will be working with our early access customers in anticipation of our broader launch. We hope you will join us in this journey and support the development of our platform as we work to make it more effective for you.
At HealthConsent, we believe that health data, like all personal data, should be treated with privacy, respect and dignity. It’s high time we reclaim control over our personal health information, ensuring its use is for our benefit and not for others to profit. Come along as we chart this course towards a future where your health data is truly yours.
Dr. Edward Sharpless