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Should Users Have Access to Data Collected by Direct-to-Consumer Health Apps?

By Sara Gerke and Chloe Reichel

Should consumers have access to the data (including the raw data) that are collected via direct-to-consumer (DTC) health apps? What real-world challenges might access to this data introduce, and how might they be addressed?

In this second installment of our In Focus Series on Direct-to-Consumer Health Apps, that’s what we asked our respondents. Learn about the respondents and their views on data privacy concerns in the first installment of this series. Read on for their thoughts on whether and how consumers should gain access to the data that direct-to-consumer health apps collect.

Deborah DiSanzo:

I have long believed that consumers should have access to their data, including the raw data. But is this practical? Do we really, as consumers, want days, weeks, months, and years of waveform data, for example, stored on our phones and to have access to it? The raw data can be voluminous, and much of it is unnecessary. Perhaps only storing and having access to the waveforms for a time frame before, and a time frame after, an abnormal event is discovered is a logical solution. This event raw data, combined with daily reported and summarized structured data, will be helpful to both clinicians and consumers.

Peter Chai:

It depends. I think that it varies on the DTC health app that is being used. Depending on the type of DTC device or app, there could be sensitive information that could be disclosed in these apps (e.g., substance use in a substance use disorder app), or adherence data in a medication adherence app. Data could one day be subpoenaed or used for litigation, or may be used to deny payments in the setting of worsening disease or evidence of nonadherence. There may be additional challenges that we have yet to discover. Annotated data from health apps, like location and phone use, may be leveraged to develop models to understand places where high-risk activities pertaining to specific diseases may occur.

Sara Gerke:

Yes, I think that consumers should have access to the data, including the raw data, that are collected via DTC health apps. An argument in favor of this is respect for autonomy. I believe that many patients have an interest in managing their own health and should have the option to check their data. Of course, real-world challenges include ensuring that this data is helpful to patients and that they understand, for example, when they should seek medical care. Ideally, patients would be adequately informed, perhaps by their doctors, about how to read the data and the potential benefits and risks.

Ariel Stern:

I believe firmly that any consumer that wants access to his/her data collected via DTC apps should be able to do so. A number of challenges arise quickly, however: firstly, in the absence of interoperability requirements and/or application programming interfaces (APIs), it’s unclear how useful this data will be to patients. Further, early data about which patients choose to access their own electronic health record data show that those that do are more likely to be younger and male, suggesting that having the ability to access and use such data may be associated with subsequent disparities.

Sara Gerke

Sara Gerke joined the Petrie-Flom Center's Project on Precision Medicine, Artificial Intelligence, and the Law (PMAIL) in August 2018. As Research Fellow, Medicine, Artificial Intelligence, and Law, Sara oversees the day-to-day work of the Center’s component of this collaborative project, including conducting law, policy, and ethics research; drafting reports and recommendations; and coordinating the Center's efforts with collaborators at the Center for Advanced Studies in Biomedical Innovation Law (CeBIL) at the University of Copenhagen as well as other partners.

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