June 9, 2022 | Lidia Best provides an overview of the NeuroAbilities Symposium held March 30, March 31 and April 1, under the overall theme 'Unlocking the BCI and Neurotech Market for Persons with Disabilities.' The 2022 NeuroAbilities Virtual Symposium saw experts from different stakeholder groups and featuring keynote presentations from the U.S. Food and Drug Administration, industry leaders, end users, advocates, and funders. Read the complete blog.
In March-April 2022, G3ict held 3 days Symposium bringing patients, disability advocates, regulators, innovators, and researchers to exchange their views , experiences and discuss the future of the neurotechnologies.
I had the rare opportunity to be a rapporteur of the Symposium, an honour really!
The Symposium started with general overview of current and future trends report, published by WIPO, the World Intellectual Property Organisation. It then followed up with the discussions between disability advocates and their concerns of what the convergence of medical model of disability and society model of disability may mean to disabled people.
It touched on much needed dialogue on regulatory framework, ethics, safety, and most important aspects of affordability. The final day concentrated on the practical patient’s research, the challenges in inclusion of Persons with Disabilities in the general research and ethical consideration of brining new neurotech to patients, managing their expectations and long-term support.
So how much neurotechnologies matter to the disability community? We have observed a push back from a disability community, not fully convinced about new technologies and often not trusting it. With the technologies discussed, is there a room to ensure that we do not move backwards with making society accessible to us? Will some policy makers think that since there is the technology that can “fix” our disability, then they do not need to invest in the accessible society? Perhaps those new emerging neurotechnologies can be a compliment to improving what is on offer in terms of independent living and improved quality of life with appropriate safeguards in place?
Those fears of disabled people communities are not without ground. As a recipient of Cochlear Implant ( CI) , the most successful neurotechnology, I have experienced the change of attitudes and expectations once fitted with the technology. Suddenly, society perceptions expect recipients to hear perfectly fine, since they mistakenly believe the CI “restores perfect hearing”.
Should we be worried that the decision makers, the society will stop advancing accessible solutions and rest on neurotechnology as a stop gap? How difficult is to get access to those technologies for those who need them? The process from the research , development, and trials we need to ensure that regulators, the industry, and the end users work together to make sure the technology is accessible and affordable to all.
One of the stumbling blocks to innovation in neurotechnologies is funding for the research , development and releasing the product into the market. Attracting investors is a delicate balance of seeking return of investment and realities of bringing new technologies to the market. As with all innovations, they need to be translated into a value. How do you measure the value of the technology for the individual and the wider society? It is very difficult issue to tackle and, sometimes it takes years before you can see the value. For some people, they may manage to adapt very well with new technology, and other people may not. We are all individuals, and our brain works in mysterious ways which no one fully understands.
While the technology can support personal independence like never before, there are still areas when those who use the technology require additional support such as Cochlear Implant recipients still requiring with captioning, and other accommodations. The need for accessible society has not ended with the emergence of cochlear implants , same is true with other technologies. There is clear case to reach out to reassure disability community to make clear their rights are not ignored or overtaken by the emerging technologies, innovations, which may seem to be as a fix. The technology does not “fix” Persons with Disabilities, however it has incredible role in complimenting whatever tools we use in our daily lives.
The speakers at the Symposium touched on the ethical considerations with neurotechnologies on multiple levels. Apart from ensuring the technology and follow up care and support are properly followed up, the ability to access such technologies is crucial. The speakers for the ethics panel, highlighted it was not just affordability of a technology which creates the barriers, but especially the safety which comes with implantable devices and the reassurance, that the person can have something which works with them over the years. Imagine having this amazing technology and suddenly it is taken away because it is only a prototype or because the support for existing implant is no longer available. The technology, especially implantable technology such as bionic eyes, Cochlear implants need to be backwards compatible as well, we don't want to have old, obsolete technology in our head or eye. We want something that works and goes with the technology forward. The recent article in IEEE Spectrum highlighted the issue of obsolete bionic eyes. This is important discussion and I know this topic well as Cochlear Implant recipient. In some countries we see especially with people who use cochlear implants, but once the technology doesn't work for whatever reason, after all, it is a technology and sometimes the funding may not be available to allow the person to continue with using the technology having the replacement, so on, so the continuity, the ability to have the technology throughout the lifetime when a person needs it, it is also very important.
On the second day, the keynote speaker, Professor Florian Solzbacher presented on near-future landscape for implanted brain-computer interface devices. They are the cardiac pacemakers of tomorrow - In 10-15 years they will be widely available and affect the well-being of many populations. However, the professor emphasised that the stage is set for translation: the technologies must be useful and demonstrated safe, they can scale, be manufactured, and reach a market that can sustain the products through continued development.
Following on the theme, the FDA offered a vision of a regulatory landscape that was responsive and inclusive to innovators and patients alike. They offered tools to the developers to work throughout all stages of the development of neurotechnology and digital technologies. Safety of patients is the overriding mandate for the FDA.
The final day brought academia and research in conversation with Persons with Disabilities. It was surprising to learn about exclusion criteria often affecting minority groups, including Persons with Disabilities.
The speakers agreed the society and disability does not exist in silos and it is the cross‑sectional, and if we ignore the obvious, we are not going to get the right results and we are not really studying in the right context. When we look at the deliberate exclusion of some areas in the studies due to complex nature of the studies are, we need to ensure that the Person with Disabilities, can fully participate.
The symposium during those three days have touched on many important topics and brought together everyone to the table.
Many of the discussions were not easy but by allowing all actors in neurotechnology, disability, regulations, and innovations on the same platform, G3ict accomplished amazing result: a safe space to discuss all distinct aspects around neurotechnologies and most importantly, it put Persons with Disabilities in the very Centre of those discussions.
To be honest, the Symposium has exceeded my expectations with a lot of discussions, which are very much close to what I do as an advocate .Listening to all the discussions has been really eye opener for me and I have learned so much. Today, thanks to G3ict initiative, I have gained a lot of knowledge to understand the difficult landscape of neaurotechnologies to translate into my own advocacy work. At the same time,
When you invest in the technology, you invest in our independence and our productivity being engaging in the society brings multiple benefits. At the same time, with the continued improvements in making the society more accessible to us all, we can demonstrate that the Medical and Social Models of Disability can co-exist and complement each other.
Now we need to see those discussions translated into practice and to see the benefits for everyone.
Once again, congratulations to the Team at G3ict and NeuroAbilities for creating the shared space for all actors and ensuring that Persons with Disabilities are actively included and consulted at every stage of innovation, implementation, regulations, and research of neurotechnologies.
Looking forward to more opportunities like the Symposium in the future!
Lidia is President of the European Federation of Hard of Hearing People and Vice-Chairman of ITU JCA-AHF (International Telecommunication Union Joint Coordination Activities on Accessibility and Human Factors) and internationally recognized accessibility expert and advocate for persons who are deaf or hard of hearing. She brings unique knowledge as an expert with lived experience, as a person who is hard of hearing and a cochlear implant user since 2009. Her work has specific focus on accessibility and quality of hearing care for deaf and hard of hearing people including policy development, training, and consulting. She contributed to work on standards as a member of G3ict delegation to ITU in telecoms, captioning and assistive listening devices , having authored the ITU FSTP-RCSO “Overview of remote captioning services" and H.871“Safety requirements for wearable audio augmenting devices” the recommendation on personal sound amplifiers. After 10 years, Lidia stepped down from her position of the Vice-President of the EFHOH (European Federation of Hard of Hearing) in 2020 to concentrate on international advocacy work which includes WHO World Hearing Forum. While at EFHOH she was co-author of reports into situation of hard of hearing and deafened people in Europe in areas of employment, hearing care and accessibility. In UK, Lidia is a Chairman of the National Association of Deafened People (NADP).