I'm not usually posting here with my work-related hat on, but today is an exception:
-
I'm not usually posting here with my work-related hat on, but today is an exception:
There's this project I'm working on, which aims to make personal health data accessible and useable for all european citizens, as part of the MyHealth@EU initiative.
And because I'm a product person, I'm asking people what their needs are. So, I'd be very happy and grateful if you could take about 2 to 5 minutes of your time and answer this survey here: https://survey.charite.de/myhmyh/
It's completely anonymous, we don't ask any identifiable data from you, and the results will help us make a better thing.
Of course, reposting and spreading this far and wide is completely fine and appreciated! #fedihelp #health #europe #followerpower #science
-
@giacomo @jwildeboer still waiting for that translation from the project partners, sorry.
-
@giacomo @jwildeboer still waiting for that translation from the project partners, sorry.
@jollyorc@social.5f9.de
7th question lacks important options but it's mandatory.
The question is7. What prevents you from collecting or using your health data?
Check all that apply- There is no way to collect or enter it properly
- The app(s) I tried is too cumbersome or confusing
- I don’t think anyone would use data I enter
- I don’t have the time to do this
- I have no need for this
- I don't trust apps' providers
- Nothing prevents me
Talking about health data, it's important that the data subject is the only one who can technically access all of them and get the full control over who get temporary access to some of them. Fragmentation is an important #security and #privacy property that should be preserved.
Many people, even non technical ones, are quite aware of the risks and, if asked in properly understandable and unbiased terms, will oppose to any form of health data concentration, preferring strict segmentation under their own control, a sort of "divide et impera" on their own side.
@jwildeboer@social.wildeboer.net
-
@secid das ist völlig ok. Vielen Dank für die Mühe dennoch!
-
I'm not usually posting here with my work-related hat on, but today is an exception:
There's this project I'm working on, which aims to make personal health data accessible and useable for all european citizens, as part of the MyHealth@EU initiative.
And because I'm a product person, I'm asking people what their needs are. So, I'd be very happy and grateful if you could take about 2 to 5 minutes of your time and answer this survey here: https://survey.charite.de/myhmyh/
It's completely anonymous, we don't ask any identifiable data from you, and the results will help us make a better thing.
Of course, reposting and spreading this far and wide is completely fine and appreciated! #fedihelp #health #europe #followerpower #science
@jollyorc An app designed specifically for medical data sounds like a prime target for hackers. I hope you're taking some serious precautions with people's data!
-
@jollyorc An app designed specifically for medical data sounds like a prime target for hackers. I hope you're taking some serious precautions with people's data!
@paranormal_distribution absolutely. Also, we're very much not creating a new central storage for data - it should always stay where it was collected, the only one who can combine it is the data subject.
Nonetheless, this questionnaire is not about whether we're doing it, nor about the technological or organisational how, but about expectations of what it should deliver to the people who actively want to use something like that.
(This is not to diminish the very obvious privacy and data protection concerns. But covering those in the survey in the depth they deserve would derail from the topic we want to learn about.)
-
@jollyorc@social.5f9.de
7th question lacks important options but it's mandatory.
The question is7. What prevents you from collecting or using your health data?
Check all that apply- There is no way to collect or enter it properly
- The app(s) I tried is too cumbersome or confusing
- I don’t think anyone would use data I enter
- I don’t have the time to do this
- I have no need for this
- I don't trust apps' providers
- Nothing prevents me
Talking about health data, it's important that the data subject is the only one who can technically access all of them and get the full control over who get temporary access to some of them. Fragmentation is an important #security and #privacy property that should be preserved.
Many people, even non technical ones, are quite aware of the risks and, if asked in properly understandable and unbiased terms, will oppose to any form of health data concentration, preferring strict segmentation under their own control, a sort of "divide et impera" on their own side.
@jwildeboer@social.wildeboer.net@giacomo @jwildeboer thanks for the feedback - I've added those options!
-
I'm not usually posting here with my work-related hat on, but today is an exception:
There's this project I'm working on, which aims to make personal health data accessible and useable for all european citizens, as part of the MyHealth@EU initiative.
And because I'm a product person, I'm asking people what their needs are. So, I'd be very happy and grateful if you could take about 2 to 5 minutes of your time and answer this survey here: https://survey.charite.de/myhmyh/
It's completely anonymous, we don't ask any identifiable data from you, and the results will help us make a better thing.
Of course, reposting and spreading this far and wide is completely fine and appreciated! #fedihelp #health #europe #followerpower #science
-
I'm not usually posting here with my work-related hat on, but today is an exception:
There's this project I'm working on, which aims to make personal health data accessible and useable for all european citizens, as part of the MyHealth@EU initiative.
And because I'm a product person, I'm asking people what their needs are. So, I'd be very happy and grateful if you could take about 2 to 5 minutes of your time and answer this survey here: https://survey.charite.de/myhmyh/
It's completely anonymous, we don't ask any identifiable data from you, and the results will help us make a better thing.
Of course, reposting and spreading this far and wide is completely fine and appreciated! #fedihelp #health #europe #followerpower #science
@jollyorc worth stealing any ideas from Ben Goldacres work? https://goodlawproject.org/cory-doctorow-health-data-it-isnt-just-palantir-or-bust/
-
I'm not usually posting here with my work-related hat on, but today is an exception:
There's this project I'm working on, which aims to make personal health data accessible and useable for all european citizens, as part of the MyHealth@EU initiative.
And because I'm a product person, I'm asking people what their needs are. So, I'd be very happy and grateful if you could take about 2 to 5 minutes of your time and answer this survey here: https://survey.charite.de/myhmyh/
It's completely anonymous, we don't ask any identifiable data from you, and the results will help us make a better thing.
Of course, reposting and spreading this far and wide is completely fine and appreciated! #fedihelp #health #europe #followerpower #science
@jollyorc a health app i could trust would have no internet connection.
All data would be stored in an offline, encryptet file.
No Advertising or shop in the App.
Free or BuyOnce Payment model.
Prefarable revieved by people like Bianka Kastl -
R relay@relay.mycrowd.ca shared this topic
