Stroke, Rehab, Digitalization: Where Technology Helps – and Where It Fails

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Almost 6 years ago, in mid-March 2020, at the beginning of the first Corona lockdown, I had a stroke. After 5 days on the stroke unit at Hannover Medical School, six months followed in a neurological specialist clinic in Hessisch Oldendorf. There, they literally got me back on my feet from a wheelchair.

I have been working in the IT sector for decades, and my enthusiasm for computers dates back to the days of the Sinclair ZX 81. Accordingly, I took a lot of time during rehab to think about the role of IT in healthcare: about what is still missing despite all the technology.

I experienced firsthand how digitalization can help at the very beginning of my rehab. My first intensive encounter with it was not on a screen but in the therapy room. In my blog, I described it at the time: “I have gained two new friends. They go by the names Diego and Amadeo. The two are persistent fellows. They took care of me non-stop. Practiced with me hour after hour. They actually spoke little, or rather not at all.”

A field report by Olaf Schlenkert

I was referring to two therapy robots in the so-called arm lab. For over 35 hours, I repeated movements thousands of times with them – precisely, patiently, and without fatigue. They never complained and always repeated their respective jobs with high precision. You've probably already guessed. I'm talking about robot-assisted therapy, in my case from the company Tyromotion.”

The human brain has self-healing powers – neuroplasticity – where neighboring regions take over the failed function of affected regions. However, they must be retrained for this, meaning a movement must be repeated precisely thousands of times if possible. Specialized robots offer many advantages in this environment. However, their cost usually prevents widespread use for as many affected individuals as possible.

The Crux with Aftercare

In rehab after a stroke, you practically enjoy 24-hour comprehensive care with a daily therapy density of four to six hours on average. You are, so to speak, on the therapy highway. The day after discharge, you find yourself literally on the dirt track of outpatient aftercare. No preparation for this situation is made during inpatient rehab.

The exchange of information between inpatient facilities and outpatient follow-up treatment is limited to the discharge report – a one-time event, at a fixed time, and only in one direction. There is no real dialogue. This is precisely one of the biggest weaknesses in the system. First tentative approaches already exist, for example, in the form of the aftercare portal “Caspar.” Such and similar approaches must be consistently expanded to improve the quality of life for those impacted. Personally, I would even accept an IGeL service here.

Smartwatch as a Digital Guardian

The beginning of my aftercare was bumpy: finding therapists, coordinating my professional reintegration, requesting prescriptions – my wife had to take care of everything, as I was not yet capable of doing so. Over time, the problem arose that my wife didn't want to let me go anywhere alone. Always worried that I might fall and not be cared for. The fall detection of current generations has given me back much of my independence before the stroke. In addition, I use the atrial fibrillation detection function as well as the reminder function for taking my medication, accompanied by the thought of whether an episode might occur again.

Digital Land in Sight

The introduction of the e-prescription was therefore a godsend for me. I started with the paper prescription back then. The maximum pack size of some of my medications means that I cannot get by with one pack for longer than six weeks. As a person who still has difficulty walking, the prescription has already saved me some extra trips to the doctor. My luck would be perfect if, as a recognized chronically ill person, I didn't have to go to my GP or specialist every quarter to have my insurance card read again for my routine prescriptions.

ePA Many Opportunities, Some Risks, and Unresolved Issues

My expectations for the electronic patient record (ePA) are even higher – and at the same time, so are my doubts. At the same time, I see the danger that the ePA will degenerate into a mere document repository. After my follow-up rehabilitation, I have received two more rehabs in the last almost six years. Before each, I was always sent admission forms. When answering these, I always attached some current assessments and therapy reports from my previous therapists. I would expect these reports to be in the ePA in the future.

However, upon admission to the respective facility, I was informed that they had not been read there. When asked, lack of time was consistently cited. It's a bit like “Groundhog Day.” I always have to answer the same questions during the getting-to-know-you phase with the doctors and therapists. This led to almost 30 percent of the time of the entire five weeks being spent on two physiotherapy sessions per week before the therapist could even assess my personal performance level and limits.

So, we need a record that healthcare professionals can see a benefit from for their daily work. It must not merely be a collection of documents. I must be able to summarize and query content at a minimum. Then there remains the task of making these information retrieval techniques palatable to the affected professional groups, who are often historically rather digitally averse, so that the EPA does not degenerate into a notorious digital green folder.

Conclusion: IT alone does not heal people, but it helps enormously with chronic illnesses and in rehabilitation. Digitalization must start where breaks occur: at transitions, in aftercare, and in communication between all parties involved.

(mack)