Who should own electronic medical records?

Arguments surround public vs. private records

The American Recovery and Reinvestment Act of 2009 (ARRA), signed into law earlier this year by President Obama, contained within it about a $20 billion allocation to increase provider utilization and networking of electronic medical records (EMR).

Most physicians, even if they are not currently employing electronic medical records in their practices, understand that the goal of the allocation is to have patient records networked in such a way that a particular patient's records could be shared by multiple providers, be they other physicians or institutions.

What has not been decided — at least to date — is who should own those EMRs, although there is discussion of the matter.

In recent commentaries in the Journal of the American Medical Association (JAMA), there have been arguments for both public and private ownership.

According to Mark A. Hall, JD, professor of law and public health, Wake Forest University School of Medicine and Wake Forest University School of Law, in Winston-Salem, NC, ARRA "fails . . . to resolve who owns this massive increase in electronic information. This legal uncertainty presents a major obstacle to integrating and using information about a single patient from various clinicians and hospitals."1

While "ownership of paper records was never much in doubt," according to Hall "…now that digitizing information frees it from particular storage media, confusion reigns."1

Hall notes that patients don't own the records, however.

"Patients have rights of privacy and access to their records, but neither federal nor state law explicitly extends property rights to patients," Hall writes with co-author Kevin A. Schulman, MD, of Duke University School of Medicine in Durhan, NC. For instance, patients do not have the right to sole possession or to the destruction of their original records.

Hall tells Medical Ethics Advisor that there is a "real logjam of ability to get electronic medical information flowing in a useful way. And that logjam was part economic, but was partly legal [due to] various costs and barriers to investing in these systems that have been well documented. [Also], some of the legal uncertainties about it were really making people reluctant to make these investments."

Hall suggests that there are two ways that this logjam could be broken: the government could mandate that all providers participate in such a system, or, the system could rely on "market forces," which could assign economic value to the access or potential ownership of EMRs.

The case for private ownership

Letting market forces dictate would be a case of "people acting out of a sense of what in their own interest is best for their own situation to motivate them to do these things," Hall tells MEA.

"So, it simply comes down to the question of whether it's in the interest of a provider to kind of start from scratch — actually build the medical record from scratch — or take the information that's previously been collected and use it," Hall says.

Hall suggests that it would be "more efficient and more accurate" to use existing records, "because you can't collect all the information from the past, even if you tried to."

Assigning economic value to the records would provide incentive to those who are holding the information to release it and participate in a networked system, he says.

"So, why is money necessary to make that happen? Because there's cost involved in doing things that way. I mean, providers who [utilize EMRs] get less reimbursement, because they're having to invest more resources and time to do that, to make sure the information flows to the places where it has the best use… ," Hall says.

The question of ownership introduces the right of an individual who owns something to control that thing, or prevent access to it, or even destroy it if the individual so desires, Hall notes.

"A lot of emotional significance — social significance — gets attached to owning something. . . and so I think the basic point of the article is one, first of all, we should get over that," Hall says.

"In some ways, information in a pure sense is not owned by anyone," Hall says, unless its patented or copyrighted. Otherwise, "It's just information that's out there."

For example, he says, a patient "can't tell a doctor to destroy their information. They can say, 'I want a copy of it" they can say, 'Send it over here'; they can say, 'Keep it private' and what have you."

If one considers not whether a patient "owns" his or her records, but instead "what rights of access or control" he or she should have over his or her EMRs, "the law is actually pretty sensible," he says.

For example, according to Hall, HIPAA indicates that patients can simply sell their access rights to their EMRs.

"They may not own the information, but the own the access right," he says.

By assigning economic value to this access, both providers and patients would be incented to allow others to access their EMRs.

The case for public ownership

One of the opposing view to Hall's and Schulman's is by Marc A. Rodwin, JD, PhD, of Suffolk University Law School in Boston, and he argues, also in JAMA, the case for public ownership of data.

Public ownership of EMRs — which he tells MEA would be "anonymized," — would enable advantages such as the FDA being able to ascertain "the percentage of patients who experienced adverse reactions from a specific drug, then warn physicians or take other action."

"Researchers could learn how patients respond to alternative therapies and assess their relative effectiveness and safety. They could study populations and variables not present in clinical trials and compare medical facilities and health care systems," he writes.

Under the current system, Rodwin writes, "organizations with medical, prescription, and billing records treat patient data as if those data were their private property."

For example, he points out that IMS Health, "the largest medical information" company, which operates in more than 100 countries, reported that it earned more than $2 billion selling medical data in 2006.

"Patients and the public have a strong claim to access aggregate patient data," Rodwin writes. "Patients supply the information. Data are collected because patients and the public finance medical care through fees, insurance premiums, and taxes."

Rodwin tells MEA that there is no law that "said these [private] organizations owned the data, or that it was their private property. But there was nothing there that said it wasn't theirs, that it was somebody else's. So, people just decided, "Why not? We'll sell it.' And by selling it, they're trying to make it private, but the question is, in what sense is it theirs?

"Certainly, the record may be private, but no one really says who owns the data. And there are technological means to try and restrict you, but we haven't really had a scheme [to cover this]," Rodwin says.

There are two government examples where providing data and making it public are already in effect. One is with Medicare, which collects data on those who use it and makes it public. The state of California also requires health care data reporting, Rodwin says.

In his opinion, all "federal policy makers should require all hospital to report the same data...," as well as other medical institutions such as ambulatory care surgery centers, rehabilitation facilities, nursing homes, and community health centers. Also, clinicians should be required to report drug prescribing and dispensing data to the HHS, he contends.2

This way, the government would be better able than private companies to actually put in place policies to protect the integrity and privacy of patient EMRs, Rodwin says.

"Public ownership of patient data can protect patient privacy and spurt its beneficial private uses, while also developing its use for public health and safety, which is not possible if patient data are private property," Rodwin writes.

"Physicians should advocate for such policies to further core medical values," he concludes.

References

  1. Mark A. Hall. Kevin A. Schulman. Ownership of Medical Information. JAMA. 2009;301(12):1282-1284.
  2. Marc A. Rodwin. The Case for Public Ownership of Patient Data. JAMA. 2009; 302(1):86-88.

Sources

  • Mark A. Hall, JD, Professor of Law and Public Health, Wake Forest University School of Law and Wake Forest University School of Medicine. Winston-Salem, NC. E-mail: mhall@wfubmc.edu.
  • Marc A, Rodwin, JD, PhD, Suffolk University Law School, Boston. E-mail: mrodwin@suffolk.edu.