Doctor.. could you hack me a neuroprosthesis, please?
(The thoughts expressed here are a personal view and do not reflect the opinion of former or current employers)
When I was a little boy, in 1973, Bob Marley was singing Get Up, Stand up for your rights and the article “Functional electrical stimulation - A new hope for paraplegic patients?” was published. Now, 40 year on, as a senior researcher in rehabilitation engineering I look back on things that are still true: people still fight and patients still hope. Can we improve life conditions, and how? A fundamental question is: do we meet the ‘clients’ needs?
Just to give an example: My mother suffered from a slipped disc so passing the vacuum cleaner was a low back pain for her. As a good boy I stated: “When I grow up mom, I’ll invent a cleaning robot to do the job for you”. Someone beat me to it - the cleaning robot is a reality - it sells well, and substitutes the socializing cleaning woman once offered to the elderly. I see now that a cleaning robot is not what a mother really wants. She just wants a good boy saying: “mom, I’ll do that part of the cleaning with you”, and do it right away.
Until doing my masters, the disabled people were an unknown phenomenon to me. They were not seen, not talked about. I was introduced to young people suddenly wheelchair bound with very limited personal independence due to a spinal cord injury. They were really nice people and kindly explained about the complexity of such sudden change in abilities and about the need to regain some functional movements.
First of all they told me where my ideas were no good and what research needed to be done. Together we coined a method, not an ambitious cure, just a simple idea that could help a bit and during my Ph.D dissertation, we demonstrated feasibility of restoring the hand function using electrical activation of the paralysed muscles. Not a fits all solution and not perfect, but as people say: when you have nothing, a little is a lot, and for some people it works well (see the video)
I have been active in the field for 20 years working at major rehabilitation institutions, but I’ve only rarely seen patients being offered these assistive technologies and more rarely seen them used outside the hospital. Is the problem (as some people with SCI have entrusted me) that there is no such demand or ‘new hope’ for walking? After all, wheels are more efficient than legs - provided accessibility!!!
Another hypothesis could be an issue of lack of flexibility of the healthcare system, not beeing able to provide state of the art technology to patients !?
Still, for more than forty years we continue producing scientific publications with conclusions like: “…the work carried out so far proves that functional movements can be restored…We therefore believe that patients can benefit. Further research should be carried out”.
Please, don’t get me wrong. The research contribute with important results, but obviously there is a problem of transferring the research results into the benefit of people with physical challenges.
So far business oriented people responds that it’s because the solutions are not technically good enough, that they only fit a few thousand patients and we continue the research for enhancements to the technology and demonstrate clinically effectiveness.
On the other hand less ambitious solutions have been available since the 60’ties, to alleviate the simple problem of foot drop. It applies to thousands of people living with stroke, multiple sclerosis or spinal cord injury. It’s a little electrical device providing electrical impulses to the muscle that lifts the foot and I’ve encountered many people with stroke and multiple sclerosis who gained significantly in mobility (see this user statement).
Despite demonstrated clinical efficiency and the immediate advantages it’s almost never proposed to the patients of the health care system (except for the UK ). Why???
So on the one hand we spend million dollar research to refine technology that is not widely used!!!. Will our institutions and society implement the provision of such technology!?
They need one solution that fits many, because the modern health care model reduce human life in cost/benefit analysis to numbers. However, as long as assistive technology is not used it’s difficult to identify exactly where to improve it. We know that consumers must be involved early in the development, it’s difficult to do so in a realistic setting. We realize that marketing assistive technology is different than selling a robot vacuum cleaner.
So a relatively simple method of restoring the hand function in people having broken their neck (cervical spinal cord injury), that has been demonstrated useful in a large clinical trial has not become available to people who really need it because it does not fit the ‘business model’ of modern health care systems !?
As an example we experienced that half the participants wanted to take the experimental device with them home. We are not allowed to do that. I’ve only spend around 50 euro to build the prototype in the laboratory, but we are not in the 1970’ies anymore. In the name of assuring ‘quality’, ‘safety’ etc, we need to manufacture, CE mark, register as a medical device and so on!. To provide a patient with a medical device we need to spend hundreds of thousands of euros on paperwork!!! And who is then going to sell at a reasonable price. Why should people, already challenged economically by loss of health, spend 5-10 k€ for a device that could be made much cheaper?
That’s where the revolution of OpenCare –with a subset of community driven provision of assistive technology - comes in.
Could we leave people with a physical handicap to become a maker, create their own assistive technology?
Would it be possible for, for example, researchers to help people living with a disability to hack a dropped foot correcting device like connecting an Arduino with an extension board?
Will doctors provide indications of how to find the assistive technology, which might solve your health issue?
That would mean that people should take responsibility for their own rehabilitation devices. They would have full ownership. Clearly they must be guided by healthcare professionals and experts without conflict of interests to ensure that everything is done ethically, safe and sound. How?
Maybe if we reunite people living with physical challenges with researchers they would both benefit and research becomes action and functionally useful to the society?
What do you think?
July 2016 Rune Thorsen