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danielcohen00
13th November 2014, 19:04
Hi all,

I hope you don’t mind me getting in touch. I work for a Digital Healthcare agency based in Manchester, UK called Havas Lynx. We produce digital tools to help empower patients.

Very recently I was approached by a friend called who suffers with Motor Neurone Disease. She had the great idea of creating an application that would help patients with this condition.

She explained there was a need for a tool that would store all the information that is important to her and would help her to communicate with family, carers and healthcare professionals.

This could be an app, a website or even a booklet. However, after speaking with my friend, she suggested it should allow the user to store information on:

Patient background (profile, photos, next of kin and contact details)
Medical information (current treatments, allergies, side effects)
Symptoms (type of disease, areas of onset)
Daily routines and preferences (bath/shower, foods, room preference, indoors/outdoors, TV/Radio, Music playlist)
Photographs of when they were well
Hobbies or activities
Advanced directive for refused treatment - legal paper
Functionality to print all the above


This tool would be useful to patients, carers, family members. This tool may be useful for people with dementia or any other debilitating illness.

As an agency we are willing to invest time and money into a tool of this sort and would like support from people such as yourselves. We feel it’s our corporate social responsibility. I will be driving this forward and I would like your input as patients or family/carers. Please could you help by answering the following questions:


Do you think something like this would be useful to patients/carers/HCPs?

What functionality to you think would be most useful for patients?

Which functionality do you think would be most useful to carers and HCPs?

What other functionality would you like to see in an application of this sort?

Anything else you could tell us about your organisation or anything you could help us with?


Many thanks in advance,

Dan

Terry
13th November 2014, 19:17
Hi Dan;

One person had something similar, have a look at:-

http://www.whatmattersnow.org/

Regards Terry

danielcohen00
13th November 2014, 21:49
Hi Terry,

Thank you for this, it's a very interesting tool and very useful for people.

Kind regards,

Dan

Terry
13th November 2014, 22:31
Not sure how it compares with what you're planning.

DaiTheDragon
13th November 2014, 22:44
Hi Dan
I think an app like this would be very useful. Apple have included in the new update called Health but it is too general. An app that would give information about my particulars would be very useful. For example I can't lay flat without my machine that breaths for me. If I fainted or something some could look at my phone see the app and what they should do to help me.
Of course the price would have to be fair.
David

danielcohen00
14th November 2014, 11:57
HI David,

Thank you so much for the feedback, it's great to hear that an app like this would be useful. It would be a free app, something that I would like to collaborate with the likes of yourself to create something useful. I feel committed to this idea, as it has come from a patient that has now, sadly passed away.

We have the skills to create this, and if it's definitely a useful tool, we can pull together a team to build it.

Please can you help by answering the following questions?

Do you think something like this would be useful to patients/carers/HCPs?
What functionality to you think would be most useful for patients?
Which functionality do you think would be most useful to carers and HCPs?
What other functionality would you like to see in an application of this sort?

Thanks for your time!

Dan

DaiTheDragon
14th November 2014, 18:48
Yes it would be useful to patients/carers/HCPs
For patients it would be handy to have a way of telling people that you can't speak, can't drink water, can't breath without a machine, can't stand etc. a way of telling strangers what to do and what not to do. Also who to contact in an emergency. Your name and address and telephone number
It would be handy to have a list of medications. Who your doctors are or specialist.
You could add a simple calendar for appointments.
For the icon you could use the mnda colours and for text MY MND. I think most people know what mnd is after the ice bucket challenge.
Hope this is of some help to you.
David

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