“Innovation in Assistive Technology: Voice of the User” Buchanan et al (2019)

Simone

Simone

Senior Member (Voting Rights)
Coauthored by Ricky Buchanan (Australian pwME/CFS) and Natasha Layton (President, Australian Rehabilitation & Assistive Technology Association), this open letter was published in the journal Societies this week.

Abstract
This article is an open letter to assistive technology stakeholders from an assistive technology user perspective. Contemporary systems thinking in assistive technology identifies the interlinking themes of people, products, personnel, policy and provision. We add to the current discourse on these five themes through the voice of an expert assistive technology user, who states that “As a disabled person and as a long-time expert assistive technology user, this is everything that I wish you knew and everything I wish you would do.” Our objective is to provide a user-centered commentary upon current trends and innovations in assistive technology, illuminating real impacts and outcomes from a social perspective and adding a rarely-heard voice to the literature.

https://www.mdpi.com/2075-4698/9/2/48/html
 
Interesting.

the paper said:
These illustrations amplify the perspective that “… future research should focus not only on the technical development as such, but rather on a sound implementation, social embedding and evaluation of technological solutions which already exist”
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Reading that article makes me think that we need tech occupational therapists - someone who can come to your home and identify things that can be done using technology to make a significant difference in your quality of life. Things as basic as setting older people up with a tablet and showing them how to order groceries, but also things like making lights and curtains and heating controlled from laptops or phones; or voice activated software, noise-cancelling head phones, fitness trackers and apps ...

I guess tech solutions would be a good topic for patient support group meetings, and for training of community facilitators employed by patient charities. Maybe a thread here?

At the moment our patient support group currently goes to a lot of effort to print and mail out newsletters, but most people could access that material via facebook or an email. For the relatively small number of people who can't because they can't use IT, perhaps we should be offering to help them get confident with technology.
 
Hutan said:
Reading that article makes me think that we need tech occupational therapists - someone who can come to your home and identify things that can be done using technology to make a significant difference in your quality of life
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There are assistive technology services in various parts of the UK but the services are geographically very variable and generally under funded. Historically the services have focused on specific physical disabilities, but they are potentially very relevant to severe ME. Often specific charities, such as the Motor Neurone Disease Association, raise the profile with their patient group also meaning specific patient groups are better served than others.

My knowledge is twenty years out of date but though the technology itself has changed dramatically in that time I suspect the service provision has not. An assistive technology service generally needs to be able to respond to very variable needs and one off adaptations, so a multidisciplinary team is essential requiring at least medical physics input as well as specialist OTs. Usually Speech & Language Therapist and Physiotherapy input are appropriate too.
 
Hutan said:
Reading that article makes me think that we need tech occupational therapists - someone who can come to your home and identify things that can be done using technology to make a significant difference in your quality of life. Things as basic as setting older people up with a tablet and showing them how to order groceries, but also things like making lights and curtains and heating controlled from laptops or phones; or voice activated software, noise-cancelling head phones, fitness trackers and apps ...
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Good idea. That would be a 'psychosocial intervention' that actually makes sense. Help patients connect online, be more independent through the use of technology, etc.
 
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Wow, I think this is my first post here, I don't even have an avatar! Thank you all very much for your kind words about the article.

It's so mind-blowing that I get to do this - I got ME/CFS when I was doing my university undergraduate degree and at the time I wanted to be an academic … and then I got sick half way through my degree and now I'm 44 and I've never been well enough to go back to study or work since getting sick at 19, although I did eventually manage to do the very last little bit of the degree by correspondence …

It's AMAZING to me that people (especially Natasha Layton!) are so supportive of my desires and value my perspective enough that I get to do peer-reviewed publications like this even though I only have a bachelor's degree! I thought ME/CFS had stolen this from me, and it's so unbelievably cool … I feel like I found this awesome back door where I can sneak into the doing the fun bits of academia!


Hutan said:
Reading that article makes me think that we need tech occupational therapists - someone who can come to your home and identify things that can be done using technology to make a significant difference in your quality of life.
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That is 100% a thing that any occupational therapist *should* do, but at the moment it depends on your having an OT who is familiar with the tech and thinks it's relevant to you. Hopefully over time this will become much more common!

- Ricky
 
Good idea @NelliePledge. One problem I've mentioned before with OT's and ME is the only OT we've ever seen for our ME is based in the local ME service and is entirely focused on pacing, activity management etc. When I raised the subject of home adaptations she dismissed it as 'that's what the green uniform OT's do - nothing to do with us'. She didn't even seem to know how to do a referral.
 
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