Opinion: Google Engineer: What My Own Health Fear Taught Me About Sharing Medical Data

The next day, to my surprise, I was rushed to the hospital and admitted to the acute care unit with a platelet count of one (the normal range is 150-300). My doctors struggled to reconstruct my chart and asked me about my medical history in order to diagnose me.

Why haven’t they had access to my history of epilepsy? Because these episodes took place in another hospital. Why weren’t they aware of my recent episcleritis attack? Because these meetings had been handled in a private establishment. Why didn’t they have platelet counts from three related blood tests from last year? Because these had taken place in a blood clinic in another county. Even my patient portal (available on my phone as I’m a bit of a geek) turned out to contain incomplete data, forcing my doctor to go into a long email exchange with my GP in order to manually retrieve the history relevant.

After several hours, I was diagnosed with Immune Thrombocytopenic Purpura, an autoimmune disease that attacks platelets and prevents blood from clotting. Now every few days I make a one hour round trip (plus 30 minutes looking for parking) to the nearest hospital for blood tests, even though my local GP can draw my blood more easily. Why? Because their computer systems are not connected, so this is the only way to be sure my doctor will see the test results the same day.

Overnight, I went from just thinking about healthcare as an engineer working in healthcare IT to being a patient whose medical record was a pressing concern.

Given the incredible technological advancements in medicine and the digitalization of healthcare, it seems our suppliers should now have access to our complete medical history. After all, we can lead much of our life with just the phone in our pocket – we can even get a personal DNA profile with a simple home test kit. But the reality of sharing medical data is much more complicated.

What is missing is a true longitudinal health record (LHR). Basically, having an LHR means that wherever you go, no matter which healthcare provider you visit, the information you choose to share is organized in a single medical record that is available to you and to all providers that. need to see it. Data from your hospital, general practitioner, pharmacy, laboratories, etc. should all be available in one place.

LHRs exist in various forms today, but they are not yet fully useful. On the one hand, only certain healthcare providers or hospital networks use them. They do not begin to exist, in principle, until hospitals health information networks and share their data at the state or national level. But the data shared is often incomplete. It may not be in real time. The information is usually buried in a separate area of ​​“external documents” (clinical notes, scanned documents, faxes) and is therefore not readily available where it is needed most: at the point of care.

Global legislation and policies are moving in the right direction, but progress is slow. In reality, health data still remains compartmentalized because the cost and complexity of their grouping are too great. The UK’s National Health Service (NHS), for example, was built on a series of disparate electronic health record (EHR) systems that have built up over time, and many large US networks have grown. through the acquisition of several hospitals. Either way, the underlying technology, data formats, coding systems, and hospital workflows are all different. EHRs themselves have limited capacities to allow them to communicate openly with other data sources, and even where they do, the tool does not exist to build and maintain a truly harmonized LHR in an affordable manner.

This cannot be solved by moving everything to a single mega system or creating another proprietary format. It’s the kind of problem that requires open standards, interoperable systems, robust security protocols, and rigorous but effective information governance. For this to work, governments would need to enforce open data standards around interoperability so that data can be merged. Being able to link systems together and provide a synthetic view of key data is a good start, but there are huge opportunities in both clinical care and analytics if data can be harmonized and standardized into one. registration. The LHR of the future should assemble real-time data with a flexible but consistent data model based on open standards, and present it in a way that helps clinicians more easily navigate the complex interactions between conditions and develop more targeted care plans for their patients. the patients.

LHRs will need to be created in a way that allows hospitals to take control of their own data and cost effectively maintain the LHR as other systems evolve. Hospitals operate with thin profit margins and limited budgets, and it is often difficult to quantify the value of interoperability. Any solution must clearly demonstrate the ROI so as not to eat into the budget for other necessary expenses.

Our health information is very personal to us, and the computer systems that operate on this data must be built with the highest principles of privacy and security. But at the same time, we need to be bold in our recognition that medicine is teamwork and that information sharing (whether between clinicians or between organizations) is a necessary part of providing the best care.

As my experience has shown me, the limitations of how healthcare IT is currently structured have a material impact on patient well-being and add to soaring healthcare costs. The opportunities to simplify data analysis and exploration for both analytics and point-of-care are enormous. Patient care will improve. But in addition, more clinicians will be able to improve patient outcomes and reduce unwarranted treatment variations. Mandatory reporting and operational management will become easier and cheaper, allowing hospitals to become more efficient. This will only happen when healthcare providers, regulators and tech companies recognize the importance of properly defining the underlying platform rather than adding to a build-up of point solutions.

Like for me? I am back home now, and my life is returning to a (new) normal, although I am no longer allowed to play and fight so vigorously with my children.

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About Catherine Sherrill

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