Health eHeart Community

a forum hosted by the Health eHeart Alliance

Data privacy concerns


#1

Dear members, dear researchers.

eHeartStudy does not allow users to unregister via their web interface which is in 2018 a serious privacy concern. Seems we have no way to remove our data and revoke consent.


#2

Dear eHealth,
I agree with ti44
Can you please let us know how we can unsubscribe, have our data removed and revoke consent for further use. Otherwise the practice of collecting this data would be illegal.
What research ethical committee has this passed through and can we see the approval letter ?

thanks


#3

I am in agreement. I want all personal data deleted and to terminate the collection of my personal data. I have received no benefit for my past participation.


#4

Hello @ti44 @f97710c3bccc55e31a25cf318fe56a and @jo41,

I appreciate your concern for the privacy of your data. We take data security very seriously. All study data is stored on very secure servers that adhere to the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). Please check out our data privacy policy and data security measures to learn more about how we are keeping your data safe.

Participation in the Health eHeart Study is voluntary and you are free to withdraw your consent at any time. If you would like to stop participating, please email the study staff at coordinator@health-eheartstudy.org and they can assist you.

We would be sad to see you go but value your participation and feedback. Thank you!


#5

Negative. By not having the option for users to delete their account you disregard basic choice of users and force them to contact a support person.

I tried that! It takes them a few days to answer a simple mail with a request to delete account. Furthermore their response was not a confirmation but a Comcast style blatant push to keep user locked in with the question why we dont wanna remain in system. After responding to that email it takes them a week again to respond. This is not acceptable and shows clearly that you dont let users go.

Stop abusing users. let them remove their account directly.
you should be reported for your awful business practice!


#6

Again, I am completely with ti44 on this. Will, after consent withdrawal all our data be deleted ? Your answer to our question should make all participants critically think about their voluntary given data.
Another for me very important point: you have some Universities mentioned in your supporting institutions. I am in Australia member of a Human Research Ethics Committee and know how this works in the USA as well. Your study will have ethics approval, I hope.
Can you show us the approval letters ? Failing this I will contact my colleagues at ethics in these universities and make them aware. You can not have it both ways.


#7

Hello @ti44 and @jo41,

Thank you for your responses. The Health eHeart Study is governed by the UCSF IRB and has IRB approval. Once consent is withdrawn, the study will stop collecting any new data about you. You can view your consent form by logging into your account and clicking on “settings” and then “study participation preferences”.

The current process for withdrawing consent is to email coordinator@health-eheartstudy.org which directly contacts a member of the study team. I apologize for the delays in response you have been experiencing and have brought this to the attention of the study team. I have also informed them of your request to view the IRB approval letter.


#8

Thank you sgetabecha. I am particularly keen to see the Ethics Committee approval letter.
Looking forward to it.


#9

Hi @jo41,
Please find the study’s most recent IRB approval letter linked below. Thank you for your inquiry.
Health eHeart Continuing Review Approval Letter 12.17-11.18.pdf (2.4 MB)


#10

Its pretty clear that eHeartStudy does NOT care about users, privacy and regulations.

  1. we cant remove ourselves from the study. there is still no way to confirm if i was removed since i couldnt do it myself.
  2. additionally they lock in users also in this forum, there is no way to remove my user here too. so im trapped twice!
  3. i started receiving SPAM mails from this forum suddenly. i never asked for mails. never gave my consent for emails. yet it sends me regularly some stupid summaries of something i never asked for.

As a result of this I will be reporting it to proper authorities. I have asked several times to be removed but no action was taken apart of heartedly assuring emails that are useless at best. A study that has access to our health data cant be allowed to abuse our trust.


#11

I get part of the issue here – but I guess I am also equally confused about your participation to begin with in context with withdrawing now. You voluntarily signed up to give data and allow it to be used. You basically entered input into a research study (or multiple studies) that once the data was collected, it could/would have been used for other aspects of the research.

Opting out of FURTHER participation makes sense, and that should be somewhat easier than has been described here. This would stop further collection of your information, but the information already provided (seen and processed) is water under the bridge. Just because you did not perceive a benefit to your participation does not mean that your information wasn’t valuable – it could have led to some additional work in a particular research area, or a deeper dive into relationships of some data that previously wasn’t seen as a pattern – but your data may have helped highlight a potential pattern that warranted investigation. My understanding was that this is research work to help the greater good – and if it help any of us in some measure, along the way, all the better.

Deleting your login, your posts, linked applications, and related non-aggregated, non-anonymous information is a reasonable expectation and something that it seems this process is designed to do – albeit perhaps not as simple or as straightforward as you might prefer. As for the other data already shared, as long as it’s in aggregated / anonymous form once your personal information (name/address/contact details) is removed – I can see no practical reason for TOTAL removal of ALL information – which seems a bit like what you have asked for.

We don’t need to debate the merits of either your or my comments here broadly – just felt that perhaps there was some misunderstanding in what you signed up for at the start.