I'm not usually posting here with my work-related hat on, but today is an exception:
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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 Gemacht. Kleine Anmerkung: Frage 6 gibt mir keine Möglichkeit zu sagen das ich Lösungen zur Erfassung habe und verwende.
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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
Question 6: Not enough trust in privacy of organisations who might get my data
Question 16: Bad gendered translation "ein medizinischer Fachmann" is in my case "eine medizinische Fachfrau"
Major gap in the questionaire:
Data protection (and legitimate reasons to be suspicious that medical data will not be handled carefully) was not addressed at all. -
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
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@giacomo @jwildeboer still waiting for that translation from the project partners, sorry.
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Question 6: Not enough trust in privacy of organisations who might get my data
Question 16: Bad gendered translation "ein medizinischer Fachmann" is in my case "eine medizinische Fachfrau"
Major gap in the questionaire:
Data protection (and legitimate reasons to be suspicious that medical data will not be handled carefully) was not addressed at all.@muenchnerin @jollyorc
I totally agree that data protection is crucial. Especially after (and within the ongoing) desaster with the German ePA (electronic patients file) my trust is totally broken. This is strongly enforced by the multiple every day security breaches and data theft which IMHO private companies do not try to prevent even at moderate costs.
In this environment I would never give the most private data I have to any company as long I can help it. -
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
Leider musste ich die Befragung abbrechen, da ich Fragen, die ich nicht beantworten wollte, nicht überspringen konnte.
Ich bemühe mich, wenn ich es für notwendig halte, sehr, im Internet anonym zu bleiben. Viele bemühen sich, diese Anonymität zu brechen. Ich weiss nie, wessen Bemühungen gerade zum Erfolg führen. Daher bin ich _grundsätzlich_ vorsichtig, welche Daten ich freiwillig herausgebe. -
@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
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@jollyorc
Leider musste ich die Befragung abbrechen, da ich Fragen, die ich nicht beantworten wollte, nicht überspringen konnte.
Ich bemühe mich, wenn ich es für notwendig halte, sehr, im Internet anonym zu bleiben. Viele bemühen sich, diese Anonymität zu brechen. Ich weiss nie, wessen Bemühungen gerade zum Erfolg führen. Daher bin ich _grundsätzlich_ vorsichtig, welche Daten ich freiwillig herausgebe.@secid das ist völlig ok. Vielen Dank für die Mühe dennoch!
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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!
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@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.)
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@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!
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