The Birth of Ciitizenship / by Anil Sethi

Believe it or not, our de-identified health data has probably been bought and sold several times without our knowledge. Yet, getting a personal copy for our own use is like pulling teeth. Our records seem to be readily available when a large research company writes the hospital a check, but not when the rightful owner of that data needs access to receive treatment. Why can’t we have frictionless and instantaneous access to our own health information when we need it? Because some industry professionals view our history as their asset. By controlling our information, these health institutions make money.

It’s total bullshit.

Our health information is ours by right (check the HIPAA Privacy Rule of 2000). We have a right of access to our data—to all our data, not just what’s offered in the “portal.” To make the best possible choices for our care, we should control it. If a company wants access to our data, they should ask us.

That’s why we created Ciitizen: a platform for you to aggregate and manage your information and decide how it’s used. Like using TripIt to auto-build your travel itinerary, you forward us your health data in any format, our technology automatically cleans it up and curates it into a machine-computable profile, and from there it’s easily shareable. Because we aren’t relying on our employees or other humans to sift through your personal data to get you that profile, no one else gets to see your data—just you and those who you choose to share it with.

And, hey, if you don’t want to share with anyone, that’s your prerogative. It’s not our data. It’s yours. That’s the difference between Ciitizen and everyone else offering “patient-centered” care: access to your comprehensive data can only come from you. You can share. Sell it. Donate it. Or do nothing. These are some of the many choices you have as a citizen (pun intended).

Don’t think patients will want to share their data? You’re @$#!ing crazy. I’m so tired of listening to that self-serving counterargument. Who’s more incentivized to contextualize and share their personal information than a person in need of treatment? More importantly, who’s going to stop them? At Ciitizen, we’re making the release of health information frictionless so that every patient around the world owns their personal data, as is their right. There are other companies out there working to get patients their data as well, but many of them simply store your information as is. We don’t want to create a digital version of a messy filing cabinet: your data should be in a format that can actually be used right away. That way you’re in control to make the best possible decisions for your care.

Hoarding data will no longer give providers a competitive advantage. Instead, newly minted data services offered directly to patients will create more options and opportunity moving forward. Health care is headed in this direction. If hospitals and providers want to retain and continue serving their patients, they need to skate to where the puck is going to be. We won’t have to rely on exchanges to help mitigate the transfer of patient information anymore, nor do can we be forced to accept belated copies sent to us via antiquated faxes or CD-ROMs. Patient-mediated portability will ultimately solve interoperability between providers. From here on out it’s going to be BYOD: Bring Your Own Data.

The more hospitals we visit as patients, the more breadcrumbs of data we must collect to share with our physicians. The more data we make available, the more that can be done when we share it back. With access to big data comes the potential for machine-learning technology, deeper research on the impact of gene variants, advancements in targeted treatments, access to clinical trials, and the elimination of cumbersome administrative tasks for providers (MDs and PhDs should be analyzing data, not scrubbing it of PHI). Doctors and researchers will then move Precision Medicine forward and patients will receive better care. Everyone wins.

At Ciitizen, we’re going to force this progress by doing things the right way. The people will control their health information, not the industry. That data belongs to us citizens. That’s what putting “patients first” actually means. With control, you have options. The more that patients share their information to benefit their care, the more we can do in the fight against chronic illnesses. To kill a disease like cancer, we have to match its pace, move for move. Researchers need continuous and near real-time access to our health information, yet today our data is locked up in the provider silos where we receive our care as patients.

I know this first hand. Cancer killed my baby sister. It was Monday 10:14 AM on September 11th of last year. They called to say her heart rate was dropping, fast. I ran to her room at Hopkins. Tania was dead. Her body had already started to go cold. It all happened so fast, because cancer doesn’t work on our schedule. It moves ruthlessly and without remorse. Before she died, my sister asked me to share her health history with researchers. If future patients could live on because of her data, she wanted to help the cause.

One out of two people will be impacted by cancer in their lifetime. That’s why I made a deathbed promise to Tania that I would help destroy cancer, in my lifetime.

For her, and for all citizens of planet Earth. 

-Anil Sethi