UK researcher seeking input into a project - Cure Parkinson's

Cure Parkinson's

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UK researcher seeking input into a project

CPT_Helen profile image
CPT_HelenPartner
8 Replies

UK-based researcher, Jenny is studying the self-tracking practices of People with Parkinson's in the context of everyday life. The motivation for her research comes from evidence that self-tracking is an important way to self-manage health.

She would like to examine how design recommendations for self-tracking features can be incorporated into an online health community. To do so, she is seeking help from 5 members to participate in three one-hour design workshops.

If you are interested, please contact helen@cureparkinsons.org.uk and I will connect you to Jenny. Many thanks

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CPT_Helen
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8 Replies
WinnieThePoo profile image
WinnieThePoo

What are self tracking practices?

CPT_Helen profile image
CPT_HelenPartner in reply to WinnieThePoo

Hi there, by self tracking I meant following what happens to your Parkinson's - if you have a routine and introduce any change to that routine, what happens

Despe profile image
Despe

Helen,

May I have more information on Jenny, credentials and how she is going to use the information? Thank you.

CPT_Helen profile image
CPT_HelenPartner

Hi Despe, might you be able to email me helen@cureparkinsons.org.uk as I have a flier about this that I can't add as an attachment to a post

Rhyothemis profile image
Rhyothemis

I've noticed there does not seem to be much interest in self tracking. For example, there's lots of interest on topics relating to glucose metabolism, insulin resistance and keto diets, but no major threads on use of continuous glucose monitors (unless I missed it) .

johntPM profile image
johntPM in reply to Rhyothemis

I don't know if my efforts count as "much", but I self track my Parkinson's. Being able to monitor dopamine levels and automatically change the dose accordingly would be a considerable achievement. But, I'm not there yet. See:parkinsonsmeasurement.org

Rhyothemis profile image
Rhyothemis in reply to johntPM

What a great site!! Is the time code Unix epoch time?

How many unique users do you have?

johntPM profile image
johntPM in reply to Rhyothemis

Yes Unix epoch time. About 2000 unique visitors / month.

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