“This whole area of research is hampered by people working in silos.”

Neuropsychologist Prof Greg Savage explains the thinking behind the Frankl dementia app


In our latest video, neuropsychologist Prof Greg Savage explains the thinking behind Frankl’s dementia screening app and the need for better ways of sharing clinical research data.

Transcript:

I’m Greg Savage. I’m a research and clinical neuropsychologist. A lot of my clinical work relates to the assessment of whether someone is at risk of having a neurodegenerative disease like Alzheimer’s disease. We do a lot of testing. It takes a long time to get an answer to that kind of question. And often the answer is not definitive enough.
What we need is a test that focuses on damage to areas of the brain that are involved in diseases like Alzheimer’s disease. That’s the goal. To have a test that is not too confronting. Simple, short but can distinguish between the kind of memory problem that is something to be seriously worried about versus one which might not be so worrisome and could be treated perhaps.
This whole area of research is hampered by people working in silos. There are lots of memory clinics around even across Sydney but they don’t tend to talk to each other. Apps which work on an open science basis and data sharing provide a way out of that tight loop that people get into. We’d have not only distributed and large datasets but we’d have them over periods of time which would be ideal for tracking disease processes longitudinally.
Of course there’s the perennial problem of data sharing when you have medical records. A technology that has multiple levels of security with distribution of essential data so that no node in this network actually gets to see the whole story provides that level of security that we would want, that we’d insist upon.

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