What does the Future of Health ID and Data Look Like?

I grew up in a household with two doctors for parents and it raised me to be a little more conscious of the workings of our health care system; It was often hat on Sundays my little sister, @BeatrizMelges and I would get dragged to day rounds and I also encountered a more personal experience in the health care system due to a car accident. That has foster my fascination with the differences between private versus public, small boutiques versus large corporate conglomerates, and what that means in terms of care and experience. 

I was sort of privileged in terms of health care in Brazil due to my parents’ professions. Walking into a hospital was always awarded with some comment about how much I grew or  congratulatory remarks on my last dance presentation, or swimming competition. I didn’t realize it at the time, but because of my parents, I really never had to tell the hospital who I was; My identity wasn’t questioned because I was my dad’s or mother’s daughter. With this relationship came knowledge of my history, a reason for them to know my past, and a reason to ask about my future as it related to my care.  

It wasn’t until later on in life when I moved to Canada alone for university, at the bold age of 17 that that changed. I felt so independent making the move but when I went for a check up and to ask for some medication for a nasty cold, it dawned on me:

“Oh lord, where is my health data? I don’t have ANY of it.” I quickly realized that moving countries, I had lost my identity and my health records were no longer available…

and there I was with this little piece of colored paper that  asked me to detail out my whole life’s health history… 

Fast forward several years, I am still living that nasty experience; Every time I move, every time I see a new specialist or get transferred, I have to share in that same old form, my history, my tales and scars. Depending on my memory (and patience for that day), some things are shared and some are not. My providers rarely see the full picture. When sent to a specialist, I can only hope they had a small amount of information sent over by my family doctor.

I know that many providers have converted their paper records to electronic records and some may argue my frustrations are become a thing of the past; Efforts are underway to share information between providers (hospitals, primary care practices, nursing homes, etc.) so that, if given permission, they can see your health information to provide the best care possible.  This is a great idea, but in reality looks a tad different. 

If you look at Canada for example, the country has a single payer system and yet when moving to Electronic Medical Records, Canada still has different systems across all provinces. Infoway shares that there is no certainty that the systems are compatible across the country. ( Guess what that means? It means I am Bianca in Vancouver with all sorts of data and information about my history and my health care identity, but when I am in Toronto, that doesn’t come with me or it isn’t easily accessible. In a way that makes me a whole new Bianca in Toronto to the healthcare system…)

What also gets me thinking is the way we categorize people’s data and records; Consider the number of ‘Jon Smiths’ living in the same town, or even under the same roof.  Now think about the number of Jon Smiths in a county, state or the nation. What about the Jon Smiths with the same birthday? 

Healthcare organizations spend a lot of time using and perfecting complicated data systems, algorithms and CRMs that use a lot of different proxies to ensure that the Jon Smith standing in front of them is the same Jon Smith found in their system. Staff are spending countless hours to delete duplicate errors and match records from one healthcare provider to another for every patient. This is expensive time that could be spent focusing on prevention and treatment, not matching records. 

Because it is still so challenging to get records from other providers, we are relying on patients to share their data, history and results.  I keep thinking about the number of missed treatments and repeated exams that are costly to the system and sometimes even harmful to the patient. The hours spent, the dollar costs. All because of what? 

Well, Suspect Identity. 

The notion that the best way to identify me is a combination of a birthdate, Social Security Number, name and address. It is collected by multiple people, and sent by regular and electronic mail between providers and billing companies. Or it could be some other form of proxy, like a health care card, with some mug shot of me (from God knows when) that we decided shall give me free access to health care if I am in Canada. What accuracy of care comes with that card? Well, the amount I have been able to share since I got my Ontario one. What about the first 17 years of my life in Brazil? What about what happened when I was in Vancouver? Well... that’s all important information when it comes to my care, but it isn’t captured in this card… nor any suspect identity I might have. 

According to an environmental scan of patient matching records in 2014, the Office of the National Coordinator for Health Information Technology found that the best error rate is around 7%.  That means 7 out of 100 records are mismatched. 

Scary? I think so. Think about those 7 that might have been misdiagnosed.  Worse still, the error rate is usually closer to 10 to 20 percent within a healthcare entity and it rises to 50 to 60 percent when entities exchange with between record because the records aren’t built the same. 

Many patients cannot tell you accurately themselves what their prescriptions are or name all of their conditions. Think about the future of health care with the aging population for a second. Think of how health care is not an individual affair. Think about how we will be prepared to access our aging parent’s health data to appropriately care for them.  How will we manage sharing that data when their records and identities are so fragmented today, that it is practically impossible to do this for your own self now? 

Well, weirdly enough this keeps me up at night. This constantly energizes me to think about what @BioConnect can bring to the world. What are the benefits of a ConnectID Patient? For me, for you and for the system. 

@BioConnect is developing a platform where we want to enable people to have their #RightfulIdentity back, to possess not multiple suspect identities, but your one holistic identity. I think of the possibility of attaching your rightful identity to your health care data, to allow your trusted care givers, family and health care providers into that shared vault, and access what is necessary to properly care for you. 

I understand that Patients are protected by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) for their privacy and care. But how are we really protecting anyone today?  Laws can only protect if they are followed, monitored and enforced through a system that sees it all. Are are they really seeing the real you?