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Rhapsody Health Solutions Team

Why patients should own their data

For more than 35 years, healthcare organizations have been trying to reduce the use of paper. The age of electronic health records was born nearly four decades ago. From the early days, the ability to exchange data was driven by various needs: 

  1. Access to timely information from across the enterprise at the point of care 
  1. Accurate content 
  1. And since the age of value-based care: access to information across unaffiliated enterprises 

Having a full understanding of the patient’s history at the point of care helps providers practice better care.  

Imagine now if that information could be shared with others in the patient’s circle of care, including the patient and their family, without needing to sign the same paperwork everywhere the patient and their caregivers go. (When was the last time you visited a provider and didn’t have to fill out paperwork asking for information you’d already provided?)  

Before we get ahead of ourselves, the first set of important questions to ask is: 

  • How do we measure the value of shareable and accurate data?  
  • What is the relation of that value with the accuracy we demand from it?  

We know that often accuracy trumps speed of access. But what if we can have both? 

There are efforts in several countries that have adopted modern medicine and modern healthcare aimed at achieving this gold rush of shareable accurate data. We have the basic elements to achieve this gold rush: computers, electronic data, fast networks, and intelligent software. So why is it so difficult to put it all together?  

The answer, while painful, is simple: Healthcare organizations are missing the will to share data because they still feel it’s theirs.  

What if we flipped the script? The data belongs to the patient.  

The patient must own it and decide how, with whom, and when it should be shared with ease.  

While healthcare organizations are concerned about HIPAA and HITRUST — and for good reason — what patients care about is easy access to readily available care, which results in the most timely, painless and high-quality care. Someone might try to read between the lines here and suggest: this writer is downplaying the importance of patient privacy.  

Trust me when I say: patient privacy and data security is extremely important to me. The rub is that some healthcare organizations make it nearly impossible to access and share my data (as a patient) and they also put minimal effort toward getting accurate, patient-identifying data. 

We hear about billions of dollars being spent on EHR implementations. What we don’t hear about is how much of that is focused on technologies or policies that support patients owning and managing their own data (including that data’s accuracy).  

Interoperability isn’t just about integration engines, matching algorithms, semantic interoperability, or APIs. What we need to focus on is the overall value the patient receives from all the technology we build, buy, implement, and interconnect. 

An analogy about purpose-built commodities: A passenger car maker starts with the driver in mind and builds the car around them. A Formula 1 race car maker starts with the wheels and the road, and the driver is lucky enough to barely fit in. 

We must focus and build healthcare IT around the patient (as passenger car makers do), not the other way around.  

So where do we start? I suggest we ask the patients. Ask them what is easy for them. Ask them to use their imagination and not be bound by the antiquated systems we have strung together over the last half century. 

The good news: Some people in the healthcare IT world are listening. VirtualMD (for example) allows a patient to call and talk to an urgent care provider on the phone or via a web video call, explain their symptoms, get diagnosed, get their meds or other needs filled and shipped to their residence within hours. That’s convenience!  

Certainly, I cannot get a broken finger fixed over the web, but looking at the reasons we visit a doctor, quite a few of those visits can be eliminated with just a little bit of intelligence and technology which will lead into fewer ER visits (read: preventable care). 

Another LoFi method that we know of is helping patients help themselves. Visiting a doctor’s office, your local urgent care, or ED Emergency Room is a royal pain in the behind. It is anxiety inducing, and it is one major reason patients avoid going to a doctor.  

Imagine all Emergency Room visits that we could avoid if we took care of preventable things up front. Patient outreach requires providers to know more about each patient. This means providers and other healthcare organizations need to readily share what they know about the patient (and everyone else the patient chooses to have access to their data). 

Patients are wary about their personal health information to be used for malice. What if the insurance companies find out about a patient’s pre-existing condition, or their future employer finds out about their mental health issue?  

Worse, what if big brother is looking to use health data toward nefarious reasons to help big pharma do price gauging of needed medication based on social determinants of health? Security and convenience are often competing demands. Luckily, we have technology and smarts to help achieve both. Let’s focus on the right outcomes: superior and speedy care for patients with the least opportunity to create friction. 

The Rhapsody Interoperability Suite offers tools that support the secure sharing of clean, connected health data. These solutions are backed by dedicated employees who have spent a lifetime in healthcare IT and have a passion to achieve what patients want—ownership of their data.  

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