punkish: Who Owns My Data?

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# Who Owns My Data?
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University of Maastricht, NL • Nov 9-10, 2017

Puneet Kishor (Plazi)

Released under a [CC0 Public Domain Dedication](https://creativecommons.org/publicdomain/zero/1.0/).

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## Who Owns the Data?

<cite>Hall MA, Schulman KA. <a href="http://jama.jamanetwork.com/article.aspx?articleid=183601" target="_blank">Ownership of Medical Information.</a> JAMA. 2009;301(12):1282-1284. doi:10.1001/jama.2009.389.</cite>

.left-column[
<h3><img src="img/patient.png" width="67"></h3>
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.right-column[
**The one who receives care?**

<blockquote>
Patients have rights of privacy and access to their records, but neither federal nor state law explicitly extends property rights to patients. <span class="hilite">For instance, patients do not have the right to sole possession or to the destruction of their original records.</span><br>
… <br>
Privacy law (which grows out of tort law) may appear to give patients property-like control, but privacy rights enable patients only to block access, not to sell the information, and privacy governs only clinicians and payers, not anyone else who might possess the information.
</blockquote>
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## Who Owns the Data?

<cite>Hall MA, Schulman KA. Ownership of Medical Information. JAMA. 2009;301(12):1282-1284. doi:10.1001/jama.2009.389. <a href="http://jama.jamanetwork.com/article.aspx?articleid=183601" target="_blank">http://jama.jamanetwork.com/article.aspx?articleid=183601</a></cite>

.left-column[
<h3><img src="img/patient.png" width="67"></h3>
<h3><img src="img/care-provider.png" width="67"></h3>
]
.right-column[
**The one who gives care?**

<blockquote>
Ownership of paper records was never much in doubt.<br>
… <br>
Clinicians, as owners of the paper records they maintain, can give or sell medical records to other clinicians for treatment purposes and block access by anyone <span class="hilite">except the patient.</span>
</blockquote>
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## Who Owns the Data?

.left-column[
<h3><img src="img/patient.png" width="67"></h3>
<h3><img src="img/care-provider.png" width="67"></h3>
<h3><img src="img/payer.png" width="67"></h3>
]
.right-column[
**The one who pays for care?**

<blockquote>
Insurers own the tangible vessels in which they store patients’ medical information.<br>
…<br>
<span class="hilite">Patients have rights of privacy and access to their records.</span>
</blockquote>
]

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## Who Owns the Data?

<blockquote>
In the emerging era of electronic health informatics, few other medicolegal questions are more critical, more contested, or more poorly understood. The ARRA of 2009 allocates up to an estimated $20 billion to implement clinical information systems, and it aims for the use of electronic health information “for each person in the United States by 2014.” It fails, though, to resolve who owns this massive increase in electronic information. <span class="hilite">This legal uncertainty presents a major obstacle to integrating and using information about a single patient from various clinicians and hospitals.</span>
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## Ownership of health data in the US

<cite>Health Information & the Law Project. 2012. <a href="http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison" target="_blank">Who Owns Medical Records: 50 State Comparison</a>. Milken Institute of Public Health</cite>

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## What if I move 
### from Wisconsin

<figure class="svg-container">
    <img src="img/us-states-ownership-none.jpg" width="100%">
    <figcaption>ownership undefined</figcaption>
</figure>

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## What if I move
### <span class="punkish-dim">from Wisconsin</span> to California

<figure class="svg-container">
    <img src="img/us-states-ownership-hospital.jpg" width="100%">
    <figcaption>hospital owns my data</figcaption>
</figure>

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## What if I move
### <span class="punkish-dim">from Wisconsin to California</span> to New Hampshire?

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## Property vs Privacy vs IP Laws

.left-column[
### Property
]
.right-column[
> Property encompasses a range of legal rights and entitlements, including <span class="hilite">the right to exclude others from, and the right to profit from, sell, dispose of or destroy one’s property</span>. These various rights (and there are many more) are often referred to as a “bundle” of rights or, more colorfully, a bundle of sticks.
]

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## Property vs Privacy vs IP Laws

.left-column[
### Property  
### Privacy
]
.right-column[
> Privacy law is protective of individuals, like laws against assault and battery. Privacy law may prevent someone from taking your photograph without your permission, or from disclosing embarrassing facts about you. <span class="hilite">Privacy is based in tort law, rather than property</span> (tort, property and contract being the three big common law civil disciplines, i.e., not criminal).
]

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## Property vs Privacy vs IP Laws

.left-column[
### Property  
### Privacy
### IP
]
.right-column[
> Intellectual property (patent, copyright, trademarks and trade secrets) are yet another category. Despite being called intellectual “property,” these rights do not derive from common law, but from statute. In the U.S., Art 1, Sec. 8.8 of the Constitution authorizes Congress to enact IP laws, and they have done so. So their basis is purely statutory. Interestingly, <span class="hilite">there is no statutory protection in the U.S. for data or databases</span> (unlike Europe). Thus, those wishing to protect individual medical data must rely on common law property or privacy theories to achieve their ends.
]

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## Statutory vs Common vs Natural

.left-column[
### Statutory
]
.right-column[
> Statutory law or statute law is written law set down by the legislature. It is fairly meaningless to say that we have a right if there’s no way to enforce it. The court will enforce a right if there is a statute establishing the right and the process of enforcement.
]

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## Statutory vs Common vs Natural

.left-column[
### Statutory
### Common
]
.right-column[
> In the US and England,  common-law is a set of principles and precedents that the courts of the land have discerned, one way or another, over time.
]

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## Statutory vs Common vs Natural

.left-column[
### Statutory
### Common
### Natural
]
.right-column[
> Natural law is stuff like “All men are … endowed by their Creator with the right to life, liberty, and the pursuit of happiness.” The thing is, unless the Creator gets the legislature and courts on its side, to interpret, delimit and confirm those rights, there’s no way they can be realized.
]

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.two-column-header[
<h3 class="yes">Yes to ownership</h3>
## Unpatients—why patients should own their medical data
]

<cite>Leonard J Kish & Eric J Topol. 2015. Unpatients—why patients should own their medical data. Nature Biotechnology. Vol. 33, No. 9. Sep 2015</cite>

.left-column[
### Shared home
]

.right-column[
> For the benefits of digital medicine to be fully realized, we need not only to find a shared home for personal health data but also to give individuals the right to own them.
]

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.two-column-header[
<h3 class="no">No to ownership</h3>
## Why patients shouldn’t “own” their medical records
]

<cite>John Rumbold & Barbara Pierscionek. 2016. Why patients shouldn’t “own” their medical records. Correspondence, Nature Biotechnology, Vol. 34, No. 6, June 2016</cite>

.left-column[
### no ‘property’ in data
]
.right-column[
> <span class="hilite">There is no property in data… it cannot be owned nor stolen</span>. Thus, the proposed benefits of ownership described cannot accrue to patients in that way. This fundamental understanding is crucial to any argument about providing patients with the right to access their own healthcare data, given that they are appealing for legally enforceable rights. … There are property rights in a database as a thing in action, but these relate to intellectual property or *sui generis* database rights (which apply mostly in the European Union).
]

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.two-column-header[
<h3 class="no">No to ownership</h3>
## Why patients shouldn’t “own” their medical records
]

<cite>John Rumbold & Barbara Pierscionek. 2016. Why patients shouldn’t “own” their medical records. Correspondence, Nature Biotechnology, Vol. 34, No. 6, June 2016</cite>

.left-column[
### no ‘property’ in data
### contracts enforce trusted exchange
]
.right-column[
> There are also philosophical objections to the assertion that “without ownership, there can be no trusted exchange.” It is <span class="hilite">the ability to enforce contracts that is the basis for trusted exchange</span>, not the concept of a thing in possession. A contractual right in personam overrides a right in rem; therefore, this is a better basis for protection of data rights.
]

---

.two-column-header[
<h3 class="no">No to ownership</h3>
## Why patients shouldn’t “own” their medical records
]

<cite>John Rumbold & Barbara Pierscionek. 2016. Why patients shouldn’t “own” their medical records. Correspondence, Nature Biotechnology, Vol. 34, No. 6, June 2016</cite>

.left-column[
### no ‘property’ in data
### contracts enforce trusted exchange
### privacy instead of ownership
]
.right-column[
> <span class="hilite">The rights over personal data largely relate to issues of privacy and confidentiality</span>, and can be contrasted with the rights over anonymized data.
]

---

.two-column-header[
<h3 class="no">No to ownership</h3>
## Why patients shouldn’t “own” their medical records
]

<cite>John Rumbold & Barbara Pierscionek. 2016. Why patients shouldn’t “own” their medical records. Correspondence, Nature Biotechnology, Vol. 34, No. 6, June 2016</cite>

.left-column[
### no ‘property’ in data
### contracts enforce trusted exchange
### privacy instead of ownership
### ownership is US-centric
]
.right-column[
> <span class="hilite">Patient ‘ownership’ of data would have the potential to make access to aggregated data more difficult and thus to hinder research</span>. Their proposed solution might be optimal for the US situation (with its)  lack of interoperability of health IT systems, the payment of fees by healthcare providers to access their patients’ data held by other providers and the disincentives in a fee-for-service system to reduce repeat testing of no medical value. (It) would prove an impediment in nationwide public healthcare systems such as are common in the EU and of which the UK’s National Health Service is typical.
]

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