The pandemic was such a monumental and dominating news event, that it was difficult for other important stories to have their moment in the sun. As important as many of them were, it was simply impossible for them to command our attention for the long-term significance they represent.
April 5th was one such date; it was rightly described by the prestigious American Health Information Management Association as a “transformative day in healthcare data exchange.” Not known for bold pronouncements, the AHIM was reacting to the official implementation of the last phase of the 21st Century Cures Act which goes back to 2016. This final phase deals with granting patients access to their medical records – with no impediments, bureaucracy or foot-dragging.
Specifically, the legislation recognized that because “Americans need to make informed health care decisions it is important “that government rules should improve access…to their health information without special effort.”
The bill was bi-partisan, and as Senator Patty Murray reinforced in her opening statement about the legislation, we must “ensure that electronic health records are accessible to patients and families, so that they are able to stay engaged in their care.”
It seems obvious that all patients are entitled to this access, yet it took decades for it to become the law of the land.
Once consumers have access to their data – whether it’s how much screen time they are spending on their phones, or how much they are spending on their credit cards – they can make better decisions
We also know from history that when data is unleashed and unlocked, entrepreneurs will seize the opportunity and build innovative solutions on the new-found access.
One example of the power of shared data is Waze. This app is a great example of what happens when crowd-sourced data is aggregated and analyzed to benefit the community. For example, Waze aggregates traffic information that is contributed by 130 million “Wazers” to help us all navigate more efficiently.
In terms of health care, the access that is now available will close a persistent knowledge gap that was caused by decades of data imprisonment. Ironically, despite our enormously sophisticated healthcare system – and the billions invested in it –millions are not getting the treatment and support that is right for their specific condition.
Access to data is critical, but when it comes to medical records, it’s simply not enough. Without clarity, access means nothing. Democratizing health data, translating medications, diagnoses, and lab tests into a simple, easy to understand picture, and forming connections based on this critical data is the mission behind Alike. We are leveraging the data access made possible by the new legislation by translating it into something that is both tangible and helpful.
Patients upload their data to the app – where it is secured by de-identified technology that strips their information of any signals by which it can be recognized – and we then connect them to clusters of people who are as “medically alike” to them as possible.
A cluster is a subset of patients who share multiple conditions – what is called “co-morbidities” – and grouping them is essential to understanding a patient’s condition and prognosis because there is really no such thing as a single disease.
Now, just imagine the power of what happens when, for example, the cluster of people who have been on your exact medical journey with the same comorbidities, can share their experiences, their reactions to medications you are considering – and their emotional journeys. Just like Waze, you can use the knowledge of the crowd and the experience of those who have been on the same road as yourself to optimize your journey moving forward. As a patient, you will be able to gain medical insight and emotional support not possible before; you will become a more informed patient, able to ask your physicians smarter and more probing questions.
What’s more, when you put people together with the same clustering criteria, clinicians will have the ability to ingest patient histories and use that data to create risk calculation models, predicting the trajectory of a variety of conditions, providing an invaluable and unprecedented ability to anticipate both the course of a disease – and its sequelae – with new precision.
We need all to give thanks to the bipartisan group of legislators who put aside political differences, and created a new era of patient empowerment which will result in dramatically improved physical and emotional well-being.
In a report on “The Power of Data”, Pew Research noted:
If someone is motivated enough to dig, interested enough to analyze, and knowledgeable enough about their chosen topic to see data with fresh eyes, they can start a revolution on a small scale (like preventing medical error for a loved one)…
What Alike – and other start-ups are doing – is amplifying that “small scale” revolution, so “someone” can be “everyone.”
The more Alike we are, the more alone we will not be.
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