Michael McSheaDigital Health
February 18, 2017
How did this happen? After all, you can get all your financial data in one place with Quicken or MINT, so why can’t you see all your healthcare data in one convenient location? The fact is that healthcare providers have a hard enough time sharing data with each other to get a complete view of your health much less consolidating it for your convenience
Given that medical mistakes are the 3rd leading cause of death behind cancer and heart disease according to a recent Johns Hopkins study, this should be a bit frightening. How easy is it for a specialist to make a mistake if they do not have essential information that your primary care doctor has?
Buckle up – if you can make it through this blog, you will understand why you need to take matters into your own hands, for the health and safety of your family!
Why is your healthcare data so hard to get in one place?
Part of the problem is that, as health records went from paper to electronic records, there was a lack of standards on data formats and medical terminology. In techie terms, this is the healthcare data interoperability problem.
There are two challenging dimensions to this problem. Understanding them is important to having the “aha” moment when you realize that if you want to take control of your health, you have to take control of your health data.
The first problem is the ability of one electronic record system to recognize the format of data from another system. The HL7 standard has been around for a while and goes a long way toward solving that problem, although more recent standards such as FHIR are gaining favor because they use more modern interface approaches (web services) like the rest of the modern computing world. Unfortunately, even with “standards” gaining ground, getting data from one computer to another (e.g. between your specialist and your primary care doctor or between your doctor and you), requires work on both sides.
Though you may have access to your data through the Web (called a patient portal), don’t expect that to make it easier. Even if there was an easy download button (which there typically is not, if the portal provides you access to your records at all), if your family is like mine, you would need to download from five different portals (primary care, OB/GYN, pediatrician, orthopedic specialist, local hospital, etc.) for anything approaching a complete health record for a single family.
Even if you could download from all of your portals, you would then bump into the 2nd dimension of the healthcare data interoperability problem, which is the medical terminology problem, also referred to as semantic interoperability. This issue is even more vexing than data formats. It has to do with what the data actually means.
Whether it is heart rate, blood pressure, temperature, or even gender – different systems have different definitions. This makes aggregating data together into a single health record a very challenging task. Did you know that many modern Electronic Medical Record (EMR) systems have five different choices for gender? But some systems have three. So how do you combine data between the two?
A long history of attempts to aggregate and share, but little progress in decades
Attempts to create Health Information Exchanges to let providers access your records across systems have been around since the 1980s but got little traction with so much of your data on paper. Back in 2004, the Office of the National Coordinator (ONC) for Health IT was created, and grand visions of a National Health Information Network started to emerge, with public Health Information Exchanges (HIE), but motivating different health systems to share data on these exchanges is like asking Kohl’s to share data about their customers with Target.
Little progress was made getting data online until in 2009, as part of the American Reinvestment and Recovery Act (ARRA), a provision called the HITECH Act incentivized hospitals and doctor practices to invest in EMRs. Today about 90% of hospitals and 80% of doctor practices have EMRs. Hospitals and physician practices were incentivized to invest in EMRs and got real money if they bought an EMR system that met interoperability standards and another minimum set of functionality that the EMR needed to deliver called “Meaningful Use” (MU) capabilities.
Examples of MU are registering whether the patient is a smoker or not, what their allergies are, drug-drug interaction checking, etc. Remember when ePrescribing suddenly became the norm? Thank MU. MU also required primitive ability to provide patients their data through a web portal, emphasis on primitive, as in not what you are used to from your favorite retail store, bank, airline, restaurant chain, or even coffee shop.
If your data is all now digital, why is it still so hard to get?
Simply put, there is no perceived financial incentive for anyone in the healthcare system to aggregate your data and make it easy for you to access. Integration of all these systems costs money, especially to solve the interoperability issues described above. Many of your healthcare providers now have EMRs and have implemented the bare minimum of “portal” requirements to meet MU criteria, but this is hardly helpful if you want a complete view of your medical record and each provider you visit only has a part of it.
Your data might be spread across your primary care physician, your OB/GYN, and your ear/nose/throat specialist, while your children’s records are at the pediatrician and orthopedist. And don’t forget about the pharmacy, the trip to Minute Clinic, and the routine procedure at the hospital. Unfortunately, there is no player in the healthcare industry that has the incentive to aggregate your data all in one place and make it convenient for you to have it in one place when you need it.
This is starting to change due to an evolution in how healthcare providers are getting paid. Increasingly, they are paid by insurance companies (or the government when it is Medicare or Medicaid) based on outcomes rather than procedures. Improving outcomes requires acting from a complete set of data. To help your doctors meet this challenge, there are many exciting companies in the Population Health space, like Philips Wellcentive, that are enabling this with fantastic technology that helps providers know which patients need what care.
Although this transformational change in the healthcare industry is resulting in aggregation of your data, it is nowhere close to providing you convenient access to your own health records to control your own health and manage your family’s health. It could take a decade or more for this transition, and consumer access to data remains an afterthought.
So what should you take away from this?
Wow! If you cannot count on anyone in the healthcare industry to manage and access your complete healthcare records effectively, how are you going to get all that data together for your personal use? To take control of your health, you need to take control of your health data and that goes for your loved ones too.
How is that specialist you take your elderly father to going to know what meds he is on when he prescribes the next one? What info will the doctors have at the hospital when they give your spouse or child meds during an overnight stay in the community hospital, and what will protect them from drug interactions or allergies? The simple answer is – they won’t have complete information unless you bring it with you. The only way to be safely sure that the information will be in the right place at the right time is to take control of it yourself.
The only way to be sure that you have accurate data at the right place and the right time is to have it in the palm of your hand, on your mobile phone. That is a big part of the inspiration behind ICmed, a social platform for managing family health. Not only can you have the data you need when you need it, but you can share it with your spouse, your doctor, or other caretakers. You can discover your family medical history by connecting to family members. And most importantly you can have your health data and the health data of your loved ones when you need it, and where you need it – in the palm of your hand.