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Hearing Health Enters the Big Data Arena: Ownership Considerations

Privacy and Security guidelines for ear-level testing and ear-level devices were discussed in a previous post which focused on who has authority over data and devices.  Authority is not the same as ownership, which is the subject of today’s post.

Willingness to endorse and participate in these Big Data-driven environments will vary among stakeholder groups (manufacturers, suppliers, consumers), depending on their perceived ownership of data, devices and processes.

Technological Innovation Ushers in Big Data

Hearing healthcare will soon enter–or be dragged into–Electronic Health Record systems (EHRs) and Health Information Exchanges (HIEs).  That will introduce our field to a Big Data, along with more extensive privacy and security demands. At the same time, patients/consumers will demand– and get–capabilities to test their own hearing for purposes of purchasing, storing, and curating their own hearing devices and listening preferences.  Their data will be stored and encrypted by one means or another.  Thus, data will flow in many directions:  between providers and record/exchange systems; between end-users and those same systems.  In private and secure systems, Big Data will be hard at work managing, interpreting, collating, and predicting.

In the high traffic data world ahead (and beyond the onus of privacy and security) loom basic questions of ownership.  Who owns which data?  Answering that question is of tantamount importance to audiologists; manufacturers; consumers of hearing services and products; and those who recommend government policy.

Audiometric Data

The following thoughts reflect debates — some longstanding — on ownership of audiometric data and data processes in our field.  Readers are encouraged to comment and add to the debates.

  • Brookings’ privacy definition(previous section) refers to end-users as “information owners” and others in the supply chain (like ourselves) as “authorized entities.”   This seems clear:  patients own their data, audiologists and others control the data with respect to privacy and security processes.  Yet, independent audiologists view audiograms and other patient records as practice assets, especially when valuing their practices to sell.
  • The distinction of diagnostic audiograms (i.e., reimbursable under Medicare and other insurers) versus hearing tests for purposes of fitting amplification poses a conundrum for audiology dispensing practices, though not for hearing aid dispensers in strictly retail environments who do not bill under insurance.  Audiologists are compelled by HIPAA’s  patient portability language to release audiograms and related records upon patients’ signed authorizations.
    Thus, an audiology practice’s “ownership” of audiometric data is shared, at best, for audiograms performed as part of the medical record.  One can argue theoretically that other hearing tests performed solely for the purpose of hearing aid fitting are property of the practices, but in reality such tests are indistinguishable from other audiograms in patients’ records, especially if the records are part of an electronic system.  Note that this line of argument does not distinguish “free” tests from those billed to patients or insurances.
  • In the case of self-administered tests or questionnaires on the Internet, user ownership seems obvious, but privacy seems ambiguous.  Consumers may own the data, but may not be able to access it (do all Internet hearing test apps feature results download to the user?).  Conversely, Internet suppliers  store the data and can access it fully.  Perhaps like adverse possession, suppliers who hold the data for some period may gain ownership rights?  Even if consumers don’t care about access and ownership, which many probably do not; might they have grounds to object to certain uses of the data by suppliers?

And that’s just the audiogram.

Ear Devices, Processes, and Programming

 

All sorts of arguments can be set out for hearing devices, their fitting, and their follow-up, for example:

  • Who owns users’ preferred hearing aids settings accessed by hearing aid proprietary software?
    • the end user (can s/he authorize release of that data?)
    • the provider (if there is one)
    • the device manufacturer?
  • Can/should pseudonymized fitting data flow two ways?
    • between device and developer?
    • between developer and provider?
    • between provider and device?
  • Should users claim the right to somehow transfer fitting measurements and preferences across devices, independent of proprietary systems and providers?

Looking on the Bright Side

 

Ownership vs authority; security vs privacy, so many concepts, so many questions, so much work as Big Data starts crunching.  These posts begin to sound like the work of a conspiracy theorist.  But no, Big data is not out to get us, though basic economics tells us that somebody’s going to organize the hearing device market by snagging the best and most information and using it to design killer devices that consumers can’t live without.  Free markets (to the extent that they exist) love that.

The economic theory of free markets operates like the laws of physics, without regard for individual consumers or suppliers.  In the real world, individual and proprietary rights are important.  Regulatory guidelines should ensure that rights are respected in economic systems, now and in the future.  Within those guidelines, Big Data offers far more advantages than disadvantages for firms and consumers by encouraging innovative intensity and economic growth.

Now that we’ve run through some of the concerns, the next post in the series will look at the many benefits than can be reaped by going large.

This is the 12th post in the Hearable series.  Click here for post 1, post 2,  post 3, post 4,  post 5,  post 6, post 7, post 8,  post 9,  post 10, post 11.

feature image courtesy of dac-law



About Holly Hosford-Dunn

Holly Hosford-Dunn, PhD, graduated with a BA and MA in Communication Disorders from New Mexico State, completed a PhD in Hearing Sciences at Stanford, and did post-docs at Max Planck Institute (Germany) and Eaton-Peabody Auditory Physiology Lab (Boston). Post-education, she directed the Stanford University Audiology Clinic; developed multi-office private practices in Arizona; authored/edited numerous text books, chapters, journals, and articles; and taught Marketing, Practice Management, Hearing Science, Auditory Electrophysiology, and Amplification in a variety of academic settings.