Approval for the Quantified Heart

Hello, my name is Valeria Pannunzio, posting a review request for [the Quantified Heart] (, which is applying for project approval on Open Humans.

The Quantified Heart is an international exploratory study on emerging blood pressure self-tracking practices among early technology adopters - and specifically among Quantified Selfers. In this study, we would like to track our own blood pressure (and any additional parameters deemed relevant to each participant) within a group of curious self-trackers, to explore together ways to collect, visualize and interpret this data point in order to achieve self-knowledge. The study is designed to be exploratory, participatory and to support the self-tracking interests and preferences of each individual participants.

Although the sharing of self-tracked data with will not be mandatory for participants, it will be offered as an option (e.g. for participants who want to request researchers’ support in data visualization, or for the ones who want to share their data with other participants). We would like to allow participants to execute these data-sharing occurrences through the Open Humans infrastructure. Please consult the project data management plan (link below) for more information.

Should this project be visible and available for all Open Humans members to join?

Please vote Approve or Deny , and/or comment.

Quick links

Project info

*Note: the ‘requested sources’ list is meant to provide a list of all the possible data sources participants might be interested in sharing through Open Humans within the study, but neither of them is mandatory for participation.

Hey Valeria,
thanks for sharing your project and starting the approval process! I have to say your whole documentation (IRB approval, data management plan, consent forms, etc) are another example of how to do this in a great way!

I don’t have any concerns regarding the approval but two comments/questions:

  1. The consent text you have put on Open Humans could benefit from some more formatting. The consent text field can be styled using Markdown similar to how it’s done here in Discourse. If you want me to take a stab at this I’d be happy to do the formatting of this and see whether you think that looks better!

  2. The consent form states In case you agree to participate in the study and sign the informed consent form, we will ask for your name, age, email, self-tracking background, interest towards blood pressure, phone number, and ask you if you have an iphone or an android phone (which are necessary for participation). I expected to be redirected to some kind of Google form or something after the signing the consent on Open Humans to provide this information. Is this bit still missing or do you plan to reach out to participants through the Open Humans messaging feature after people have signed up? If you want to collect information from participants right after signing up you can set up the Post-sharing URL in your project management page.

Hi @gedankenstuecke, thank you a lot for the comments!

About the consent text, I now see I got it wrong; it was my understanding that the consent text field was meant to be filled with text to be used for reference, while I see now it is meant to be actually used for accepting or declining to join the project in OH.

I need to clarify that my study, participants are also free NOT to join Open Humans, (they can self-track on their own without sharing self-tracked data at all), so I sent all of them an informed consent form covering all of the possible aspects of the study separately via mail. The text taken from that form is of course very long and badly formatted (it’s copy-pasted from a word file!), plus it does not redirect to a survey link because I’ve been manually sending the follow-up survey link after getting the signed consent forms.

So by the time participants get to join the Quantified Heart project on Open Humans, they will already have signed an extensive consent form separately. Perhaps the best way to proceed for me is to shorten the consent text to be put on Open Humans, so that it only covers the main aspects relevant to joining the project? And of course, I will format it properly - I have seen a few examples from other projects now :slight_smile:

Hey @Valeria, I see! So you expect your participants to join your study outside Open Humans before then potentially joining your project on Open Humans later on? One thing to keep in mind here is that the workflow also can work the other way around. Once your project is approved, it will be publicly listed on Open Humans, so existing Open Humans members might join your project without having undergone your study consent first.

For this reason you should keep the consent text on Open Humans in a longer form, as members that join from the direction of Open Humans already give you access to their data after signing the consent-text on Open Humans, but not any other terms of service/consent.

For the same reason (members starting from the Open Humans-side) I’d suggest forwarding members to a Google Form after joining your project, that way you could e.g. ask them to record their email address or open humans-ID, so that you can contact them.

Does that make sense? :slight_smile:

Hi @gedankenstuecke, makes a lot of sense!
I now updated the informed consent text and included a post-sharing URL with a link to the survey, please let me know your thoughts about it - and thank you for your help so far.

Awesome, I just went through the process and that’s a great onboarding!

From my side I’m okay to approve with that! But I’d love to get at least a second opinion! I’ll share this thread once again with our community to hopefully get more input soon! :slight_smile:

This looks great! And I joined – this looks really interesting and I’d love to be involved, at a personal scale (personal curiosity) as well as collaborative.

One detail: this was missing a picture, so I went ahead and added an image you have on the site. Hopefully this is OK.

There hasn’t been feedback from others, but I think that may in part be because this all looks good. (People are more likely to weigh in when they have concerns.) So with this, I’ll mark the project as approved both here and on the site. :+1: thank you!