LUPUS UK
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Chronic Illness App - Need Feedback!

Hey everyone!

I'm doing a project at university, it's a conceptual project about an app specifically designed to help people with chronic illnesses.

I would love to know your thoughts and input if such an app were to exist - please PM me if you'd like to be sent some questions, where your feedback (if ok with you) will be used in our report!

Also, feel free to PM me or reply to this thread if you'd like some more information about the project!

Thank you so much for reading!! :)

4 Replies
oldestnewest

Hey there :)

I was wondering how this app I should gonna help? Is it like a forum for support or question s or like a dairy manager to help keep track of drugs and appointments?

Reply

Hey! The idea is that it would be a place where you can record your symptoms, any flare ups etc, have medication reminders, lists of medications, and that it would also be accessible by your consultant. This would make it possible for them to see any trends you record and help with knowing what to discuss in any appointments etc. We would also like it to allow for better communication between doctor/patient so maybe the patient could request phone call appointments through the app or request a time to IM over it and so on!

If you have any more questions feel free to ask! :)

1 like
Reply

Are you in the Uk?

Have you spoken to Consultants about this? I Think they have enough paperwork without us patients adding to it!

As for phone calls, the majority of RA patients are lucky to get a phone conversation with a Rheumy nurse after a few days. I know of nobody who gets a phone call unless they are Private Patients.

Ask the professionals what they think...I'm sure we'd all love to have more personal contact with our rheumatologist, but do you know how difficult it is to get a first appointment? It can be up to two years! There are just not enough trained rheumatologists in this country to cope.

I don't want to pour cold water in your enthusiasm, but I don't think the NHS is ready for your App just yet.

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Hi, sounds a great idea. I work in health research and we are currently dong a study involving mobile phone technology to help change patient's addictive behaviours and a previous project used apps to support the patients. As agedcrone says, the NHS will probably feel it's not ready for such modern technology but if you can statistically prove an effect it's all evidence to start to move towards these types of intervention. We have worked widely with Drs, nurses etc and although there is sometimes a little initial reluctance, almost always due to time concerns and fear of 'the new', most see the benefits to their patients and actually these apps can save medics time as patients can then self manage better.

I would guess your research may show it works better for the younger population and is better for self management rather than the consultants accessing the information. As many of us will have experienced, even if we go in with a short list, they often don't have time to (or want to) read it!

Happy to be sent questions if it helps.

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