Blockchain is never the answer

“Good news, disabled Australians! You’ll soon be getting an app that will implement a welfare compliance regime designed by the people who brought you robo-debt. But don’t worry, it’ll have blockchain.” – Stilgherrian in Full tilt

Remember when I spoke about the need for disabled people to be front and centre for the development of technology which is nominally all about them?

This is a great example of what happens when they’re not.

According to tech journo Stilgherrian, the National Disability Insurance Agency is going to push ahead with rolling out an app they piloted in 2018. This app we’re told is going to use the magic bean known as blockchain to provide “smart money” that would allegedly make the whole process of dealing with service payments (including working out whether the service is valid under the user plan) much easier for everyone involved.

The pilot was a partnership between the federal governments Digital Transformation Agency (DTA) and the Commonwealth bank. According to their case study page the use of blockchain was an arbitrary decision based on the desire of the DTA to have a play around with it.

“CBA and CSIRO’s Data61 had wanted to test the potential of blockchain to enable smart money for quite a while. We were also interested to see how blockchain technology may be able to integrate with existing payments technologies, such as Australia’s New Payments Platform. The NDIS contains highly personalised budgets and payments, making it a good case study for our project.”

Leaving aside the fact that the use of blockchain in the app appears to provide no real benefit to the user.

“We found that a centralised database and our smart money proof of concept could achieve a similar front-end user experience.”DTA Case Study

The app itself has issues for people who self manage. One of the state benefits of self management is that you are not limited to NDIA approved suppliers for services. You pay out of your own funds or submit an invoice, connect it to your goals and then it’s verified by the NDIS and paid out. At the moment this is a bit of a clunky process not helped by the fact that the NDIS payment gateway isn’t the best designed system in the world.

The app on the other hand, seems very much guided towards pushing self managed people towards NDIS approved suppliers only (especially as because it has a token based payment system). They even note this in the Commonwealth Banks own report (PDF)

“However, general providers of services, such as home cleaning business, may have lower incentives to pre-register, as only a small proportion of their income may derive from the NDIS.

To overcome this issue, it may be possible to establish a graduated registration process, whereby for small transactions, service providers and/or participants could register the service in the moment, by manually entering the details and providing the service provider’s bank account information. As service providers generate more revenue from the NDIS, or experience repeat custom from NDIS participants, they could then be required to more formally register their services.”

Now don’t get me wrong. The NDIS plan management site drastically needs a rebuild. Its not obvious how much money you have left in each of your categories, attaching documents to payments requests means they appear to disappear into the ether and all in all it’s just slightly rubbish.

However what we’re getting is UI/UX improvements combined with an experiment that even the DTA and Commonwealth Bank admit doesn’t give any real world benefit to the user, and appears to be borderline as to whether it gives any backend improvements over other approaches.

Given the apparent desire to push self managed participants towards NDIS approved only and to in fact capture more providers in the NDIS token system, I really get the impression that the app and systems behind aren’t being built primarily with participants at the centre, but more the desires of the NDIS.

Combine this with claims of robo-plans, “NDIS Razor Gangs” and so on, and you’ve got a whole bunch of people worried that this is going to be the start of a process that is going to reduce people with disabilities to numbers on an excel spreadsheet to be pushed around as needed to make the bottom line look good.

Google wants to be your complete health record

So, waaay back in 2008 Google played around with the idea of creating an all encompassing health record. The idea was that it would be THE record that patients would carry with them, moving from provider to provider and ensuring that they had the most complete record of all their health interactions possible.

That effort didn’t really pan out. Between a lack of take up outside of the geeky set and an inability to connect with major health providers, Google did what Google does and shuttered the service in 2012.

Well they’re back at it. Announcing a new program to get user feedback on a potential new Health Record system being developed by Google. It’s a small program, only 300 participants at the moment, but given the amount of health data flowing into Googles data lakes via Google Fit and Fitbit, I really don’t see them backing away from this any time soon.

Google isn’t the first to play in this area, Apple is doing it, there are literally dozens of startups all trying to get into this space. I mean even the Australian Government has given it a red hot go.

Look, the idea of a single record that a patient can carry with them that contains ALL of their history is very attractive, especially for people with disabilities (who tend to have complex medical histories). The ability to say to a new doctor “here it is, now you have all the information at your fingertips” would smooth things over so much.

But the dream is often very different from reality as can be seen from the roll out of the My Health Record project in Australia. Leaving aside issues around access and data sovereignty, the My Health Record system still suffers from a lack of medical sector buy in, with even some public hospitals not integrating with it.

When evaluating any of these projects we need to ask ourselves these questions:

Who or what is the product?

Companies exist to make money. That is not a controversial statement (well at least it shouldn’t be in 2021). So how are these companies going to turn a profit? How are they going to pay for holding that data, working with all of the various different providers and above all ensuring that the data is held securely?

This is really important because if you’re not paying for it, then the company offering the service is making money in some other way. Which leads into..

Who’s data is it?

The ownership of patient data is a tricky one, at least here in Australia. Technically, all patient records belong to the medical organisation that generates them, NOT to the patient. How does this affect us IF Google or another Health Record provider decides to pay for access?

What rights do you retain over any data that you voluntarily put into the system? Can you leave with all of your data? What are the regulations around the storing of this sort of data?

Where is the data stored?

Different countries have different regulations about how and why different groups (such as law enforcement) can get access to data stored by private companies. Location will also have an affect on how much you can push back IF you find your data being misused.

Like I said, the ideal is great. But we need to be really careful about who controls the record. Because if we lose control now, then we’re never going to get it back. There needs to be a much larger discussion around standards and the rights of the patients than I think there has been up until now.

Alexa, fix my disability

When I was in the Prince of Wales Spinal Rehab Unit (awesome place by the way, professional staff, great nurses, terrible food) I noticed this sign up in all the rooms.

Above every bed in the ward there was a small Alexa device waiting for patients to ask it for help. You could ask it for the usual Alexa stuff, time, date play a free radio stream and so on. But they also custom commands set up. If you wanted to the nurse, you could either press the nurse call button or you could tell Alexa exactly why you wanted them.

Usage varied. Some people ignored them or asked for them to be turned off (the ward was happy to do so), others were more than happy to use a system which meant that they didn’t have to mash a giant button to call a nurse.

I’m not kidding about the giant button by the way. For people with limited upper body movement, the large buttons were much more practical to use than the normal nurse call system. They looked a bit like this but red.

Anyway, people used the Alexa systems to call the nurses, check the time, listen to radio and a range of different things.

I never really used it myself, upper body motion was fine and I had my own devices to entertain me.

However it did get me thinking about how useful these devices can actually be for people with disabilities. I myself have one setup at home so I can use it to turn out my bedroom light, listen to the radio, play music and so on. As part of a home automation system it can provide a person with a disability an interface to their home that they may not have through a touch system. The potential is great.

However there is an issue with the use of these voice assistants. Privacy. By their nature they are listening devices and they are always listening. What control do we as consumers have over the data they collect? At home they are privy to all conversations near their location, in hospital those conversations will include medical information.

This is a big part of tech and disability. We have to find the right balance between the benefit and the cost. For these voice assistants, the benefit is clear, they offer a relatively easy interface for everyone to access systems and information. The cost (outside of the material cost) is of course something to be determined.

The intersection between big tech and disability is a growing one and one that needs proper oversight, especially from PWD themselves. So part of my job I think is to try and shine a light on it.

My Tech

So I figured before I would get into talking about the world of tech and disability I should actually list out the tech I use to get through my day.

What is my disability?

I am what’s called an incomplete paraplegic. I didn’t injure my spine in an accident, instead I had something called a “Spinal dural arteriovenous fistula”. This fistula expanded and blocked blood supply to my spinal cord, which caused me to lose the ability to walk without technological assistance as well as issues with losing sensation, toileting and so on. Basically if it’s below my waist it’s a bit buggered.

Oh and to add to the mess I have a shoulder which likes to dislocate itself. I’ve dislocated it twice in my sleep and it used to be a cool party trick when I was a kid to pop it out and back in to gross people out.

What I use

Walking Frame

As I mentioned above, I can walk a little with a frame. The frame I use is a Coopers Non-Folding Walking Frame (Tall). One of the challenges I face is that when I stand up straight, I’m actually 194 cm tall. This means that the vast majority of frames are too short for me.

A two wheel, two skid walker with woollen holder

The woollen holder you see was made by my wife to help me carry bottles and other things around.

Manual Wheelchair

Given that I’m very limited in my ability to walk, I have a manual wheelchair to get me around. This allows me to do short trips around the shops and to the doctors. However due to my dodgy shoulder it’s meant to be more of a backup than an every day thing.

Manual wheelchair with custom cushion

Power Wheelchair

My power chair is what my OT would prefer I use in an every day setting. It’s a magnificent beast, able to travel up to 8km/h for a distance of around 16km. Sadly, more due to my height than my weight (though that does have to shrink), we can’t get it in the van. Because I’m 194cm tall, my chair has to be tall, this means that when I use a wheelchair cab, I need the Hiace models with the high ceiling, and even then I scrape my head on the boot door. So it gets out and about when I’m going around my neighbourhood, but for outings further afield it sits there.

Powered wheelchair with custom cushion

Power Bed

It’s essentially a hospital bed but fancier. It moves into different positions (which really help when I have neuropathic pains and leg spasms), it vibrates and it even has usb chargers built in. There are times when the only time I get any relief from the neuropathic pain is when I’m lying down in this bed. It frustrates the hell out of me but there it is.

I was going to post a picture but I haven’t made the bed yet 😉

Toileting

Okay this might be considering TMI, but this is a blog about tech and disability. One of the problems I have care of the fistula, is the inability to go to the toilet, so I am now dependent on what’s called Intermittent Self Catheterisation. That means I need to rely on single use plastic catheters when I go to the toilet. Without them I would need to rely on glass catheters, or a permanent indwelling catheter, both of which increase the risk of bladder infections.

Don’t worry, I won’t be posting pictures

Google Home

Lastly I use a Google home device in the bedroom. I’ve connected up my bedside light with a Genio light bulb and use either the Google home app on my phone or tablet, or voice control to turn the light on or off. This may not seem like much, but moving in bed can be quite difficult so it does make things easier.

All the rest

Aside from the above I use every day technologies just like everyone else. I have a phone, a laptop, a smart watch and so on and so forth. My use of these items isn’t much different to an able bodied person (though I have to say, step goals just aren’t a thing anymore)

So that’s a snapshot of what I use to get me through my day. It’s not everything, I also have an office setup, which allows me to work from home (I’ll detail that in another post), and I’m starting to get some tech to help in the kitchen and around the house.