What do people think about remote healthcare? Just curious :-/

Living with Parkinson's Daily life
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I Increasingly spend way too much time awake, as well as way too much time on my own, as a consequence of having good old Parkinson’s and I can spend this time researching a random range of topics!

Anyway, this may get no responses at all, which is fine, but if anybody has any thoughts that they are willing to share, I’d be really interested in knowing them.

I have recently read a few articles about wearable technology and remote monitoring as the future of ‘healthcare’ for people with Parkinson’s. There’s actually a project currently running in Plymouth focusing on moving to this type of support in the near future. The headline states that it is about empowering people with Parkinson’s :-/ (my personal experience of empowerment is that it means cost cutting and DIY - but maybe that’s just me).

Anyway, reading through the information on the project, it seems that in addition to empowerment, a key driver for the development of this type of approach is that the healthcare system is unable (unwilling?) to fund sufficient specialist nurses and neurologists to provide adequate face to face support and can not meet the NICE recommendations with the current staffing levels so remote care and advocating that people affected ’ take control ‘ of their health needs is seen as the way forward .

Plymouth Remote Healthcare for Parkinson’s project

Now I personally don’t want to be forced to access medical support via a wearable device. Any such device will most definitely be provided by a private company and who knows what their data protection policy will be. I can see that there is a place for such devices in terms of monitoring motor symptoms and tracking certain behaviours (big brother or what!) but I’m not sure how remote monitoring is going to support with non-motor symptoms and I’m old fashioned enough to prefer to talk to somebody face to face - I don’t want to log very sensitive issues such as incontinence or sexual function problems or cognitive decline via an app.

The Plymouth Project, however, seems to have the support of the charity sector who collectively tend to advocate that they are driven by the views of the people they represent. Now I can only speak for myself but in addition to the fact that I definitely do not want to be forced to wear a tracking and monitoring device in order to access Healthcare support, I also doubt that I have the dexterity to use such a device. I’m unlikely to even be able to get it on and off on a bad day never mind about everything else without access to daily, face to face help, and I don’t have this - yup, not only have I been stupid enough to get Parkinson’s Disease, I’m also stupid enough to have acquired it while living on my own :-/

I am, however, generally grumpy and I worry about my personal and potentially identifiable data being sold as a commodity without my permission. There are suggestions that patient data could raise significant money for the NHS and maybe this is justifiable if sufficient safety nets can be put in place, but I’m not sure; there are some interesting articles discussing this: Forbes: Could the NHS sell its data for 12 billion?
The Guardian - NHS data worth billions

I have to wonder if the wearing of such devices is going to be mandatory in order for certain groups of people to access healthcare and I wonder about the enforceability and ethics of this, but maybe it’s not such a bad thing? I guess I’m curious to know what other people with Parkinson’s think?
J

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Hi. Interesting. Some random thoughts:

NICE guidelines are not being met in my area, not by several miles! Contact with the Parkinson’s nurse is now by phone; new patients will wait around 5 months for their first appointment with a neurologist but after diagnosis, follow up appointments are probably going to be less than annual. Given that this situation is unlikely to change, finding new ways of monitoring PD seems a good idea.

I already wear a smart watch which monitors some health indicators: it records my heartbeat, and exercise level. It will also call emergency services if I fall (though this remains untested). While I can see the problem about privacy, for me the advantages outweigh the disadvantages and if the device could monitor my Parkinson’s as well, then all to the good.

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Many thanks for replying - I spend way too much time in my own head so it’s really interesting to know others’ views and experiences :slight_smile: J

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Hi Jane - which smart watch do you have & how do you rate it? Is it standalone or linked to a smartphone? I’m intetested in getting one for my husband tho they seem to vary in features. Falls detection & alert would be a big plus.

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I’ve got an apple smart watch, linked to my iphone (I’d had a legacy and decided to treat myself). I’ve found it more useful than I expected. It is my morning alarm, pill reminder, fall alarm, exercise monitor, and night light. it also tells the time, gives me my diary appointments, receives text messages and tells me where I’ve left my phone.

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Thanks Jane, sounds good. We are Android people though & have Samsung smartphones so think I need to look at the differences between those in more detail. Only Apple product I’ve ever had was an early iPad at a time when there was little competition but switched to Samsung for the next.

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I bought a Samsung Galaxy Watch for exercise and sleep tracking. It’s very good for those functions, but it doesn’t offer fall detection. Instead you can send SOS messages to your emergency contacts by pressing a button on your watch three times, with a brief pause in which you can cancel. This of course depends on you being conscious after you’ve fallen. You set it up through the Galaxy Wearable app. I’ve never tested it, in fact I haven’t yet set it up!

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Hi Robbie - you’re a mind reader! I’ve got a Samsung phone so have been looking at Samsung watches. There’s a new one out - Galaxy Watch Active 2 - which now has the sensors for fall detection & ECG recording although the latter haven’t been activated yet as they need FDA approval and then the relevant approvals in each country before roll out. I’ve read somewhere that roll out in the US will begin next month. Unsurprisingly it is in direct competition with the Apple smart watch. Good to know you like yours as I have a Samsung Galaxy Fit so am accustomed to the Galaxy Wearable app and linked Samsung Health app, both of which I like.

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Never tried a smart watch myself, bit of a Luddite I suspect :~S I need to join the 21st century - it’s really interesting to hear how useful they can be. Aren’t they fiddly to operate? I think they are great as an additional device that people can choose to wear but I don’t want to have to wear one as the only way of getting healthcare because there’s insufficient funding for a reasonable level of face to face support - but that could just be me. Probably is, think I’m naturally grumpy.
Time will tell I guess :slight_smile: Jx

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Definitely not a substitute for face to face care Jackson & you don’t sound like a Luddite to me! But it is a useful bit of kit for day to day, especially if you like tech. My husband’s PD is not really that advanced, so we are told, but his balance is awful - he’s had 2 serious fractures in 2 years - and has lost his sense of direction away from home so needs an escort (me or a friend) going outside our ‘home’ area. Time he fractured his hip he’d fallen in a restricted space and was hidden from view. By sheer good luck his mobile phone was in a pocket he could reach, he phoned me & I found him. If he had a very smart watch I might worry less when he’s out & about alone. And I’d like one for myself too as I like tech!

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I may actually tip toe into the modern world and investigate. :slight_smile: Thank you,
Jx

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I like the health programme on my apple smart watch. It sets three goals each day, movement, exercise (i.e. raised heartbeat) and standing ( a requirement to stand for at least a minute in each hour for twelve hours of the day). If I reach all three goals it gives me a little fireworks display on the screen. At first I thought it was just a bit of fun, but actually it reminds me to move when I’m having a lazy day and I definitely move and exercise more because of it.

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Thank you, I can see they have their uses - I remain cautious about data protection policies of such devices - though not for their basic functions - and I can’t see that they could be used as a substitute for contact based healthcare, but I can see that they definitely work for some people :slight_smile: and it’s good to know what others find useful. I find that it’s too easy to get stuck in a rut when you spend too much time on your own. Thanks again. Jx