can't see a better forum for this...
The Big life fixers - bbc2 9pm
featuring a young woman with Parkinson's, helping her with daily activities. (I think)
Thanks David! We have just shared some more info on our website about Emma and the documentary. Some of the team here have had a sneak preview and say it's definitely worth tuning in!
We will also share the iPlayer link tomorrow for anyone who can't watch this evening.
Best wishes,
Joanne - Digital team.
(Via BBC Stories) bbc.in/2gD7FRW
Yup looks great - 2 things
When will we see it available?
Why are we hearing it from the beeb and not from PDS?
ok 3 things
How much?
ok probably 4
How much!!!
???????????
Hi shoog,
The device developed for Emma in the programme is a one-off design that was created especially for her. Unfortunately, it is not available to buy at this stage. The developers plan to make the design available for free so that it can be made more widely accessible, but this may take some time.
The production company are inviting people who have Parkinson’s and are interested in getting involved with any potential research and development, to email their full name, contact number and email address to: [email protected]
If you're looking for aids and devices and haven't found any that are suitable for you, it’s worth getting in touch with Remap. Remap is a national charity with hundreds of volunteers who design and custom-make equipment to help people achieve independence and quality of life. Filling the gap where no suitable equipment is available commercially, they provide the equipment free of charge.
Find out more at www.remap.org.uk or call them on 01732 760209.
In terms of what we're doing here at Parkinson's UK, check out this video of our Digital Transformation Director, Julie talking about how we want to use digital technology to manage Parkinson's.
I hope this helps! Please do let us know if you have more questions.
Best wishes, Joanne - Digital team.
I thought the programme was fascinating and i'd love to see more of this type of innovative use of tech to make a real difference to the lives of PWP. Two things strike me about PD UKs video on Facebook: -
-why is seeking the opinions of PWP not the starting point for PD UKs strategy rather than something that's being thought about (can't remember the exact words)
-how is using an app actually going to have a significant, positive impact on PWP? I can see how it will help with reducing visits to hospitals (reducing the financial burden) and also how it could support with data collection but it's not going to help me with the things I need help with. Now an external / plug in Swype PC keyboard would be amazing!
OK, three things...
- is the issue of data protection and health apps also being considered?
J :-S
Hi Jackson,
Thanks for your comments. In this instance Parkinson's UK consulted on the documentary with Emma, we actually work very closely with Emma and have done since her diagnosis. Our starting point is always to listen to people living with Parkinson's and respond to their needs or concerns. We understood the importance of this documentary and how it would raise questions and awareness around the condition. We anticipated that people would want to know what we are doing as an organisation to keep up with changes in technology and whether we're exploring opportunities for people with Parkinson's. Which we are!
Our own videos are often made alongside people living with Parkinson's, they guide our content always.
There are many ways technology is supporting people with Parkinson's, through apps, devices and other digital research we are starting to build a better picture.
On the matter of data protection we are governed by data protection legislation and take this very seriously, our data protection and confidentiality policies are up to date and we expect the third parties that we work with to adhere to them too.
Hope this helps!
Kat
Apologies, I should make sure that my early hours' ramblings are coherent before I click submit.
I thought the programme was excellent, it was the Facebook clip that I was referring to - where your digital director talks about the charity's work in this area - not the documentary - and the clip references apps as a key focus for PD UK. There is mention of liaison with businesses as well as mentioning 'looking to' (wrong words) get the views of PWP.
In terms of data protection, I guess I mean that if a charity is going to promote the use of apps to the people it supports, some of whom are potentially quite vulnerable (the clip on Facebook seems to suggest this is the general trend) then it may be that there is an implied responsibility to ensure that the data protection policies of the companies that any given charity is working with are not flimsy or open to change and don't use 'storage' outside the eu. If an approach is to be recommended, then just expecting partner organisations to adhere to certain standards doesn't seem to be a strong enough stance, though I don't really know how the whole thing works so this is just a personal (slightly uninformed) opinion.
(Thank you for replying to my 'morning musings')
J :-)
More waffle from PUK. No answers to questions posed.
Hi Benji,
Sorry you feel that way!
Jackson, your point on data protection is fair enough. The charity takes it very seriously and we expect third parties too do so as well. These agreements are in place before work starts. They are not just verbal agreements but bound by legal rules and obligations.
Thanks everyone
The most important issue is when can we get one of these machines? The answer we should be able to give is days, not years.
Has our contact with the programme asked Microsoft to donate 1000 of these gadgets to PUK.?
In the meantime, I'll try to build something similar myself, using an Arduino microcontroller and 6 vibrating motors strapped to the wrist.
John