Hi-Tech is failing people with disabilities
The other day, Nathan Zeldes wrote to me:
Between us, I’ve always been pissed off by the lack of progress in hi-tech solutions for severe handicaps; the fact that even the legendary Stephen Hawking was using a robot voice sounding like a Commodore 64 shows how little incentive companies (and society) have in driving leading edge solutions that could liberate people from severe disabilities.
To which I replied:
The problem is a lack of incentive to develop technologies which would help only few people. It just is not profitable. People cannot have a decent standard of living or support wife & children by working only on such problems. Subsidizing the development of such a technology could lead to the basic problem of socialism (possibility of turning a profit NOT by serving another person, the basis of “true” capitalism).
A similar problem exists with “orphan medicines” – medications and
procedures for treating very rare illnesses.
What could be done?
In discussions with Nathan Zeldes and with Dr. Yoav Medan (who is involved with the orphan technology of 3D printing of prosthetic hands), the following ideas were mentioned.
1. Students doing Final Projects
- STEM students, who do their final projects, can profit from working
on an orphan technology as their final project. The students provide
a service and in exchange for it, they gain experience which will help
them later make more money in their careers.
However, most students cannot bring a product to market. The
best they can do is to solve problems in a local and limited community. - People, who are not students, could gain both experience and reputation by working on such problems.
- Companies could sponsor such projects, in order to get favorable
advertising, improve their reputation, etc. - It would be a good idea to develop ways to quickly monetize experience/reputation to allow people to live well by doing those projects for a living.
2. Dual-use Technologies
For the deaf and HOH (Hard of Hearing), most of the relevant technologies happen to have dual use, starting from Alexander Graham Bell’s telephone. Robert Weitbrecht’s acoustic coupler was useful not only for allowing deaf people use teletypes over phone lines (and not only over telex lines) but also for other data communication users.
My personal experience was with adding Hebrew support to the Nokia 9110 and Nokia 9210 smartphones at the beginning of 21st century. Those cellular phones were very useful for the deaf in the pre-SMS era thanks to their ability to send and receive FAX messages. Since Hebrew support was useful also for Hebrew-speaking hearing people, it was a profitable endeavor for Erez Zino and me. See also: כנגד קול הסיכויים (in Hebrew).
A variant of this approach is for biotech and pharma companies, when developing a new technology, to first develop it to treat orphan/rare diseases. This gives them regulatory and reimbursement advantages. Once the technology is developed, it is applied also to common diseases, for which established therapies already exist.
An example is Minovia, which is developing a cell therapy technology to treat mitochondrial diseases. They began by targetting the Pearson Syndrome, which affects only 100 children worldwide.
3. “Micro-business” methodology and support services
Orphan technologies become orphan because the Hi-Tech world is based upon economics of scale. To develop a technology, you need a sufficiently big market to make it worthwhile. A business needs to have a minimum size to have any chance for success.
A methdology, infrastructure and support services to facilitate “micro-businesses” would overcome the above barrier. A micro-business would be a business, which does not require more than few hours a month, after some reasonable initial investment in building it, and would be very profitable (in terms of net income per hour) serving its very limited market.
One such possibility is to have spread out creativity centers (both physical and in the WWW) which help people develop their ideas. Examples: TAMI hackerspace and HAIFAUP.
4. Affluent end-users subsidizing the development
One could get affluent people needing an orphan technology to fund its development. Even if they are few, just one millionaire, with a child afflicted with the problem, could be enough to fund the orphan technology’s development.
Variations of this approach:
- Government funding of technologies needed to rehabilitate army veterans with disabilities.
- Collaboration with a non-profit devoted to the disease in question. Some of them have money or access to donors.
- Philanthropic funding (from people not needing the orphan technology or themselves).
- A variant of philanthropic funding is to use crowdfunding websites (Headstart, FundIt, PipelBiz, Indiegogo, KickStarter, etc.) to donate to a project.
- Some companies declare upfront that they will allocate a certain percentage of their profits to social causes (including orphan technologies development), without expectation to make any financial returns.
5. Impact Investments
Some people invest not only for profit but also for social impact. They invest in underserved areas where they can see an eventual upside. An example is Social Finance Israel.
