I have long since stopped counting the number of tech companies that have contacted me over the years to get me to help with what they are convinced is the app/device/platform/system that millions of persons with Parkinson all around the world are just waiting for. The absolute majority of the tech people were proudly demonstrating a solution looking for a problem. Of course, most of the time the tech people expect me to help them without any sort of compensation for my time. I guess you can’t blame them for trying but frankly, I am pretty fed up with that kind of attitude. I probably have less patience with these kind of requests these days and of course people contacting me today cannot know that I have been getting literally close to a hundred more or less identical requests for the last 10 years or so…
I sincerely hope that I am wrong but often when some tech entrepreneurs contact me wanting to pitch their idea, I get the feeling that the process has been as follows:
- They have come up with a novel idea to somehow quantify/measure movement
- They have a brainstorm around potential diseases to use their solution for.
- Someone remembers that Parkinson has to do with movement somehow
- Next step: convince some funders to back their idea and deliver the solution to patients in need
…….. unfortunately it’s not that simple
Tech companies – do your homework first
My recommendation to all tech startups would be to do a quick search in Google Scholar before starting to reach out to patients with that disease for assistance with their idea/solution. I did a very crude search for Parkinson that yielded A LOT of hits (see image below). I would expect all tech startups with a genuine ambition to help persons living with Parkinson to at least check out the articles on the first few pages.
That way they can learn something about the disease they have chosen to work on and also get a sense for what kind of technology is already available in that field.
A long way to go
Don’t get me wrong, I am not a technology-hater. I genuinely believe that there is a lot of potential in using technology for Parkinson. But technology is just a tool, not a goal in itself and for the full potential to be realised, we need to change the way we develop technology. The following quote from a scientific article that I am one of the authors to illustrates that point:
[…] Our analysis shows that people with PD (PwP) want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm. […]
But is it really a technological problem…?
My final point is that the use of technology for helping people living with complex chronic conditions is actually not a technological problem at all. It is in fact ultimately a problem of business models. Let me offer an example from the field of Parkinson:
Remember the Emma Watch? It came from an innovation program in 2017 where the British young graphic designer Emma is given back her ability to draw through a vibrating bracelet developed by a designer working at Microsoft. The YouTube video (below) has several hundred thousand views and I was sent the link by many of my friends. That was 5 years ago so you might think that this fantastic bracelet should be available to buy now. You would be wrong. “Well, it’s probably in the last stages of pre-market developments then” you may suggest. You would be wrong again. On Microsoft’s webpage for this project, there is information about the prototype featured in the video. But no updates has been made since 2017…
There is no way of knowing how many out of the around 10 million people living with Parkinson around the world could be helped by technology such as the Emma Watch. Because there are currently no sustainable business models for supporting the development of genuinely patient-centered technology.