Data Privacy Insights on Participating in Biogen Intuition Research Study

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Topic Author
Speckles
Posts: 107
Joined: Sun Jul 21, 2019 1:36 am

Data Privacy Insights on Participating in Biogen Intuition Research Study

Post by Speckles »

Hi Bogleheads -

Is anyone participating in the "Intuition" research study or know about it?

I received a notice/advertisement through a past health insurance provider about Biogen's "Intuition" research study on brain health as people age. The study is legitimate and documented on the web and the Apple app store offers the app required for participation. The American Brain coalition describes the study as:

"Enrollment is officially open for the “Intuition Study” in the United States, which aims to develop digital cognitive biomarkers using everyday devices such as the Apple Watch and iPhone. The goal of this study is to generate longitudinal data from broad, diverse populations regarding cognition, potentially leading to new ways to monitor brain health and screen for early stages of cognitive decline, including mild cognitive impairment (MCI)."

I'm considering participating because (among other things) they give you a free Apple watch and and up to $280 in gift cards as well as any knowledge I'd gain from participation. Participation is remote for 2 years and appears to consist of:
  • wearing the Apple watch (provided by them) and letting them scrape off my health and fitness data
  • completing an hour's worth of "study activities" per month on the App on my iphone
After that, the data they want gets a bit hazy and I assume it is a lot of health data, demographic data, etc. Data is personally identifiable and shared with vendor Iqvia, researchers, etc. It says it is not sold or used in advertising. It does say the policy can be amended at any time retroactively. You can quit the study but they retain the data you already gave them. The privacy policy is available in the Apple App store under the "intuition App".

I realize I'd be sharing a lot of personal information that would NOT be de-identified. I'm OK with that as long as it is used solely for research and not used/sold (either on purpose or by accident) for nefarious purposes (denying insurance, profiling, etc.).

A quick web search for Biogen and Iqvia shows they are both for-profit businesses that have some publicity about ethics.

Any thoughts on the data privacy/sharing perspective and risks?

Thanks, Specks

Note: This post seeks insight into the data privacy issues of participating in a particular medical research study; please do not offer medical advice as that would be against the forum policy.
riverside1320
Posts: 57
Joined: Wed May 26, 2021 3:47 pm

Re: Data Privacy Insights on Participating in Biogen Intuition Research Study

Post by riverside1320 »

Hi -

Prefacing my response with credentials - I used to work as a product manager at a company that purchased data similar to what you might generate.

My view is cynical - I assume your identified data will be sold somehow. Now, my other view, which is less cynical, is that this doesn't matter. For the most part, the companies buying this data like identified data not to market something to you / alter your insurance premiums (which would be illegal anyway) / etc. The value of de-identification is that it's easier to link your data to other sources they might purchase (e.g., insurance claims data, also sold readily). So I wouldn't worry about the risks from a practical point of view - there aren't any. From a data privacy point of view, I would expect an intrusion, plain and simple. But again, the reality of this intrusion is that you will become one of many in an analysis where the takeaway might be "People who have condition X also tend to do unrelated but interesting thing Y". Hope this helps.
Topic Author
Speckles
Posts: 107
Joined: Sun Jul 21, 2019 1:36 am

Re: Data Privacy Insights on Participating in Biogen Intuition Research Study

Post by Speckles »

Thanks for your insights. Very helpful - especially because of your experience with similar companies. Thanks.
Circe
Posts: 381
Joined: Thu Apr 21, 2022 7:16 pm

Re: Data Privacy Insights on Participating in Biogen Intuition Research Study

Post by Circe »

I joined it about 6 months ago. I have a relative who died from Alzheimer's, so I thought that I should participate in the hope that it will help in the future treatment/prevention of it. When I joined, they were looking only for people 60+.

You can choose what data to share when you join and can later edit that. I felt uncomfortable about sharing data but I decided to do it in this case to do what I can to help a worthy cause.

It's a bit of a pain in that there are monthly and quarterly memory
tests that must be taken on their schedule and that may not be convenient. Some tests are done on my PC and others on my phone (at the study's direction). During the last series, I was on vacation with no cell service. I didn't have my study password with me so couldn't sign back in when I had a cell signal again. I only did about half of the tests before losing access.

The watch is just ok -- it needs to be charged about every 30 hours and for some reason doesn't always record my daily walks.
Topic Author
Speckles
Posts: 107
Joined: Sun Jul 21, 2019 1:36 am

Re: Data Privacy Insights on Participating in Biogen Intuition Research Study

Post by Speckles »

Circe wrote: Tue Dec 06, 2022 8:09 am I joined it about 6 months ago. I have a relative who died from Alzheimer's, so I thought that I should participate in the hope that it will help in the future treatment/prevention of it. When I joined, they were looking only for people 60+.

You can choose what data to share when you join and can later edit that. I felt uncomfortable about sharing data but I decided to do it in this case to do what I can to help a worthy cause.
Interesting! Do you receive any feedback or information as a participant? They make it sound like there is a website with “resources”.

Thanks
Specks
Circe
Posts: 381
Joined: Thu Apr 21, 2022 7:16 pm

Re: Data Privacy Insights on Participating in Biogen Intuition Research Study

Post by Circe »

Very little feedback is provided at this point.

When you take the monthly tests, you get immediate feedback about whether you did each correctly or not. It takes about a half-hour each month on a computer.
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