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An online course to self-manage MS or not?
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An online course to self-manage MS or not?

The critics are sharpening their analogue pencils to stab me in the eye. Is this elitist, ageist and discriminatory as people who are poor can’t afford access to online services? What do you think?
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Inequality is one thing that COVID-19 has shone a spotlight on and exposed the digital divide between the haves and have-nots. 

What I mean about the digital divide is having rapid and ubiquitous access to the internet for information, education and health, public & other commercial online services. When designing new services there is a tendency for some people to criticise the plans by stating that any new service can’t only be digital it also needs to be analogue and in a format, the digitally naive or disconnected can access. Yes and no. Yes, in that you don’t want to leave people behind, but no in the sense of why is it that these people are unable to get themselves connected? Should we as a society always pander to the laggards and to those rooted in the same-old approach to healthcare and for that matter education? 

The internet and smartphones, which have made access to the internet virtually ubiquitous globally, are arguable the most disruptive technologies to emerge in modern society. The disruption they have caused will only be complete when everyone has access to the internet and what it has to offer.  

Just as tech companies draw a line and stop supporting old technologies after a certain date the government at some point in the near future needs to say from this point on all government-supported services will have to be accessed online. In other words, if you want to access healthcare, social services, education or any other government-supported services you need to initially do it via an online Government portal. 

I can see the critics of this position sharpening their analogue pencils to stab me in the eye and saying this is elitist, ageist and discriminatory as people who are poor can’t afford access to online services. 

The digital divide is not about age. I agree older people are less likely to be tech-savvy than younger people, but we shouldn’t assume we can’t find a remedy for this problem. I know many older people who are online and doing it and doing it well. A personal family friend of mine is 91 years old and rents out her spare bedroom via an online portal. She manages all of the backend work on the rental portal herself. Because someone is old doesn’t mean they can be taught to use online services. The assumption that older people can’t be taught to use online services is in my opinion the ageist position. 

What the government needs to do is legislate to make sure all people have access to digital online services and training on how to use these services or a digital guardian who does it for them. Digital guardians will always be needed, just as we will always need social workers and carers. If someone lacks the capacity to do something local government need to step in to make it happen. 

What about affordability? Just as water and electricity are essential utilities access to the internet should also be an essential utility. Every school kid in the country should be given a notebook computer. Basic or entry-level wifi should be free and the government should invest in making sure the whole country has good internet access. Investment in a national broadband network would reward our country severalfold in terms of increased GDP and better educational and health outcomes. I am also prepared to bet that these policies will result in a fall in inequality. Internet access and smartphones are leapfrog technologies and many disadvantaged people will rapidly climb the greasy pole given the tools. The true democratization of the internet, i.e. free access to all, will act as a multiplier.  

Once we have solved the above then we can get on with transforming healthcare, education and everything else that needs doing and doing fast. 

The reason for getting political on this issue is that I want to design and implement an education programme for people with MS with the objective of teaching them how to manage their MS and how to navigate the NHS. I need the course to be digital so that we can use Google translate to make it multilingual. However, I have been criticised for this plan. I was told that I would be exacerbating the problems I want to tackle, in particular health inequality, with this online course. In other words, only the health literate, digitally connected people with MS would engage. What should I do? Should I abort my plans and deny the so-called digitally connected of the world an online course? Or should I draw a line in the sand and move forward with my plans and let the digitally-naive catch-up later? 

I would therefore appreciate it if you could complete a short survey (2-3 minutes) to give me some feedback on the above and how you would like to see MS-Selfie evolve over the next year or so. 

For those of you who are interested, I would suggest watching my ‘Rehabilitation in MS’ or RIMS 2021 keynote talk on how COVID-19 impacted MS rehabilitation services. Hidden in the talk are some of the issues I allude to above and at the end of my talk I recommend reading my Medium post on ‘Rethinking Healthcare’. I penned the latter shortly after my accident last year and the issues are still very raw.  

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.

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