Susannah Fox

I help people navigate health and technology.

Tracking the trackers

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Tracking the trackers

UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar.

Every day I see a new example of a survey or other tool to collect individual-level experiences with COVID-19.

Some are organized at the grassroots, others are sponsored by companies or academic medical centers. Some are for support, others for epidemiology, and still others for clinical discovery. Some would be recognized as patient registries, others would not. My definition is broad. Data can be gleaned from many sources, including stories.

My original post included a simple list, in no particular order (that list now appears at the bottom of this page). I re-organized it on May 14.

Revised list, with categories:

Existing registries now adding COVID-19 as a characteristic to track (ongoing use; individuals register and are tracked in perpetuity)

New registries, set up for COVID-19 (ongoing use; individuals register and are responsible for data input; sponsored by a company, research institution, or government agency)

New registries, set up for COVID-19 (ongoing use; individuals register and are responsible for data input; organized by peer patients or community groups)

Existing symptom and location data collection (ongoing, often sporadic use of a device or app; organized by a company whose privacy policy governs personally identifiable information)

Symptom checkers (one-time or sporadic use, no registration, though some data may be collected or tracked)

Community pools of stories (no formal data collected)

Here’s my original list:

UC San Francisco’s COVID-19 Citizen Science project

COVID Symptom Study, created by King’s College London, Massachusetts General Hospital, and health analytics company Zoe Global

Stanford Medicine’s National Daily Health Survey for Novel Coronavirus (COVID-19)

Body Politic COVID-19 Support Group (Google Doc sign-up)

Fight to End COVID (“a borderless data sharing community for both those feeling healthy and those needing medical attention”)

PatientsLikeMe’s COVID-19 forum

CoEpi: Community Epidemiology in Action

23andMe COVID-19 Study

Ancestry.com COVID-19 Study

PatientWing’s list of COVID-19 clinical trials

MyCovidStory.com

Open Health Network’s offerings include a Covid Virus Symptoms Tracker

Emory University School of Medicine COVID-19 Symptom Checker

Colorado Symptom Tracker

Kinsa, makers of “smart” thermometers, is tracking COVID-19

WebMD COVID-19 Symptom Checker

Buoy Health’s COVID-19 Symptom Checker

Oklahoma State Department of Health Public Symptom Tracker

Note: I haven’t tried any of these. If you have, can you share your impressions? Were there open-end questions where you could add symptoms or experiences that were not covered by the questionnaire?

Image: “In Dark Times Shine Your Light Brighter” by Ted Eytan on Flickr (a crop of this photo)

Reader Interactions

Comments

  1. Here is another survey from Stanford to look at caregivers caring for adults

    Are you a caregiver, caring for an adult? If so, please help with a short (15 minutes or less) questionnaire from Stanford University. We want to know how the current situation is affecting caregivers. Click here to fill out a questionnaire.

    https://is.gd/caregiverCOVIDsurvey

    Reply

  2. Here are some observations and questions I posted on Twitter today:

    – Academic institutions are setting up COVID-19 patient registries, as are local public health agencies.
    – Individuals who have had COVID-19 are setting up peer communities.
    – Private companies are tracking COVID-19 symptoms.

    My questions:
    – Are organizations asking people who have (or recovered from) COVID-19 for input?
    – Is anyone coordinating the questions being asked?
    – Is anyone coordinating the potential pooling of data?

    What are YOUR questions and observations?

    Reply

  3. I’m continuing to add to the list as I find new examples:

    All of Us (thanks to @AlyssaJoy71)

    COVID-19 Body Politic Slack Group (thanks to @JenBrea)

    Since the Body Politic study is published as a Google doc, I can share the first two paragraphs of the summary:

    “The goal of this research is to capture and share a bigger picture of the experiences of patients suffering from COVID-19 with prolonged symptoms using a data driven approach. The survey content and research analysis are “patient-centric,” conducted through participatory type research. Survey questions and symptoms were aggregated and curated by patients themselves with expertise in research and survey design. Analysis was also conducted by patients themselves with expertise in both quantitative and qualitative data analysis. This approach is especially important for COVID-19 because patients experiencing symptoms are in need of timely research and content relevant to them that is not currently available due to the novelty of this virus.

    It is important to note that this survey targeted patients with prolonged symptoms (patients with symptoms for over two weeks), though it does include a few responses from patients with shorter symptom duration. The survey was primarily distributed to the Body Politic COVID-19 Support Group on Slack, the Facebook Survivor Corps group, and through other personal social media accounts. The survey received 640 responses and was open from April 21st to May 2nd, 2020.”

    Thanks to Stacey Tinianov (@coffeemommy) for this comment on Twitter: “While a ton of surveys out there, the asking is happening in silos & in silos within silos. EX. We are collecting clinical COVID19 patient data on cancer patients (in few different registries) but have yet to marry clinical data w/PROs. Ripe for community science partnership.”

    Brennen Hodge wrote: “All of these COVID-19 research surveys leave me wanting more. I want access to the data and to be a part of the research discussion. I want more empowerment during this crisis. We have a great opportunity to put the “Public” back into “Public Health.”

    Robert Gergely, MD, wrote: “We don’t want just access. We want to download the complete Medical Records, aggregate the records and safekeep Them. The records will always be accessible using any smartphone. When will that happen?”

    April Moreno, PhD, MPA, added the following questions to mine: “Are participants made aware of the types of research being done with their data? How much access to the process and findings do participants have? What languages are they including?
    Are they mindful of health disparities in their research and how to approach diverse populations?”

    Ann Blair Kennedy, DrPH, wrote (in response to my line about asking patients for input): “That is exactly right! And once you start working with “patient experts” (that’s what we call them in my group) you will change as a researcher! My experts have opened my eyes to many ways of being a better scientist. Here’s a little about us.” (Click through to see a short video about how the team she leads has been changed for the better by including patients as partners.)

    Again, I’ll keep adding to the list and to the discussion. If you see a patient registry, survey, or community effort I’ve missed, please let me know! And of course if you have critiques, compliments, ideas, etc. the comments are open.

    Reply

  4. Hi, Susannah:

    I hope you’re well…and staying that way!

    I’d love to discuss something with you, i.e., where your list here leaves off. Notice that all of these (many) disparate surveys are about patients tracking themselves or others tracking them. But how about tracking the Responders?

    My team realized — it didn’t light a bright bulb — that there are enough people tracking patients. We wanted to track those who are in the field, taking care of patients, to (1) get a sense of how they are faring amid COVID-19; (2) determine whether infection rates among Responders can act as a proxy for infection among the populations they serve; and (3) identify whether a heuristic could be modeled that would help to identify risk of infection in the absence of readily available tests.

    Los Angeles County case study: https://medium.com/beyond-lucid-technologies/los-angeles-county-fire-covid-19-tracking-crew-exposure-tracking-month-1-progress-report-b976a98d014e

    Harris County, TX (Houston) case study: https://medium.com/beyond-lucid-technologies/harris-county-tx-ems-agencies-pioneer-longitudinal-tracking-of-personnel-while-keeping-in-mind-24cf34fb026c

    Hopefully this area of COVID-19-related survey and evaluation (turning longitudinal data on the EMS agency itself) is sufficiently under-explored that our findings will be interesting!

    Stay safe,

    Jonathon

    Reply

  5. Thanks Susannah. This is such important work! With funding from the Gordon and Betty Moore Foundation, we are tracking Covid-19 clinical registries and planning a series of webinars on Covid-19 and clinical registries. We are thinking through the webinar topics and would love to feature the patient-facing registries. Let’s touch base!

    Reply

    • Thanks! I looked but didn’t see a direct connection to or mention of COVID19. Maybe it’s only visible if you join the study?

      Reply

      • The symptom tracking on it isn’t limited to COVID-19, but of course that’s one very big part of doing it these days!

        In terms of language: In order to get an app into the Apple AppStore we had to remove all language related to COVID-19. Both Apple & Google ban you from even mentioning COVID-19 in your apps unless you are an established health organization which works against patient- & participant-led projects like ours 🙁

        Reply

        • Aha! Interesting. That’s a significant bias against patient-/caregiver-/participant-led projects. Will add to the list above and think about how to advocate for a way to expand Big Tech’s mind about citizen science. If others have ideas, please share! (For example, if a citizen science project has an RN or MD or other formally-trained-and-accredited person helping, does that count? Or does it need to be an organization, like an academic medical center?)

          Reply

    • Good to see the conversation between Susannah and Bastian below. Yes, there is a brutal tension between responsible barriers to disinformation and openness to citizen science. I understand why Apple and Google do not want people adding “COVID-19!” to their apps, but the pace of development and diversity of needs makes it very hard to offer a transparent vetting process that can satisfy big tech stakeholders. For now, I think it might be smart to let this play out in the weeds. They asked us to remove COVID-19 language from our symptom tracker, but they were ok with “Quantified Flu.” I think it is good for others to know this proved an acceptable workaround, if you are still working on app approval.

      Also, more general language was probably good for our project. After all, when you are not a “researcher with a COVID-19 grant” but “a community nonprofit attempting to serve people concerned about their health during the pandemic” then it may not make sense to call your symptom tracker a COVID-19 tracker. How does a person know their symptoms are a result of COVID-19 infection? Their symptoms may be hard to specify, or not match a standard list of expected symptoms (especially now when so much is still being learned).

      AND, in case useful to any readers: The quantifiedflu.org symptom tracker and data store provide an easy glide path for participants to share their data with researchers, built on top of the Open Humans platform, which has been used successfully for a wide variety of participatory research projects. It’s open tech, with weekly open meetings for participants and developers, and we’re happy to see more people involved. Researchers without funding to build/maintain their own platform are welcome to design studies and recruit participants, after a rapid and transparent vetting process. Development is active.

      Reply

  7. Considered a high risk group for severity of symptoms, people with cystic fibrosis who are tested for COVID19 and followed at a CFF-accredited care center (over 95% of patients) are tracked through a national patient registry. We report on these cases, # hospitalized, etc. to clinical network weekly. We are also collaborating on international CF registry effort to track case reports:
    https://www.sciencedirect.com/science/article/pii/S1569199320301259

    Reply

  8. I am a giant believer in citizen science and in patients and caregivers who want to empowering themselves and all of us by participating in research. On the other hand, as a health privacy expert I just want to make sure people are fully aware of who is getting their data and what they are going to do with it. Even academic research institutions can be both thoughtless and careless. And, if you find the recruitment for the registry on a social media site, just be thoughtful. It may not be the researchers intent for your interest in that recruitment site to be stored by the platform, but that happens all the time just from the way things are configured and your social media platform tracks you behavior for its advertising revenue. Be thoughtful out there.

    Reply

    • Lucia, thank you so much for this thoughtful comment AND for making the jump from Twitter.

      One of my new favorite podcasts is Out of Patients with Matthew Zachary. The May 11 show is a barn-burner. Matthew and his co-host Andrew MacDowell are joined by Medaptive Health’s co-founders Eric Kroll and Jeremy Block and they talk about, among other things, how people facing life-changing diagnoses are often forced to make unconscionable choices about their personal information in exchange for treatment. In the last 10 mins of the show (which I listened to twice, it was so good) they talk about the “Big Data Henrietta Lacks Moment” (unjust uses of data without patients’ consent, providing zero value back to them). Here’s the link to listen.

      Be thoughtful out there indeed.

      Reply

    • Quick update (and hopefully Lucia and others will weigh in):

      Jumbo Privacy (a privacy and security company) reviewed Care19, the contact tracing app made by the state of North Dakota . Here’s their (damning) report.

      If you want to dig in more, here’s the Washington Post article about the debacle: One of the first contact-tracing apps violates its own privacy policy: North and South Dakota’s Care19 coronavirus app sends users’ location data to more than just the government

      Reply

      • That’s a HUGE “ugh”! Now I’m wondering if N.D. designed it that way or if they (perhaps more likely) had a contractor do it who was dealing under the table. In any case, thank you for alerting us to Jumbo Privacy – hadn’t heard of them.

        My hope is that somebody in the N.D. govt is raising holy hell with the developer right now.

        Reply

  9. We hear so many rumors of data suppression mixed with assertions of our having the best or worst testing in the world … mixed in with everything else it would be powerful if citizens could submit the names of relatives lost to this virus – send them somewhere so we could cross-check the official tallies against a grass roots poll.

    Reply

  10. Good morning! I’m cutting & pasting, with light edits, from an announcement that crossed my virtual desk that pertains to our discussion:

    The U.S. Department of Health and Human Services, National Institutes of Health (NIH), National Cancer Institute (NCI) is seeking feedback on their approach to digital health solutions to address the COVID-19 pandemic and enabling new research into using digital health technologies to advance the public health response. This is a “request for information” for market research — not yet a request for proposals. It’s a chance for members of the public to hear from NIH/NCI about what they would like to learn so that you can potentially contribute your ideas and expertise.

    They will host a virtual meeting on Friday, May 29, from 2:00-3:00 PM EDT. All interested organizations are highly encouraged to attend this meeting and seek clarification about any of the information discussed below before submitting a response. The virtual meeting will be held via WebEx.

    Written questions about this notice may be submitted electronically via email to “Digital_Health_COVID_RFI@mail.nih.gov” by 5:00 PM EDT on May 27, 2020.

    Here’s the official page:
    Special Notice: Request for Information – DIGITAL HEALTH SOLUTIONS FOR COVID-19

    There is a LOT to unpack, so please do click through and read the announcement if you are interested.

    Reply

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