Healthcare Data Access, Ownership, and Does It Matter?

Blog post by Joe Babaian

This month I was privileged and honored to be a part of the Dell EMC Healthcare #TransformHIT Think Tank in Phoenix. Check out the live-stream recording of the session for an informative and lively discussion covering Consumerism in Healthcare, Precision Medicine, and Big Data/AI in Healthcare. Being part of such an open, collaborative, and highly current discussion re-emphasized the value of real community and connections in the healthcare arena – we are in this together. Thank you to my fellow panelists and our great Dell EMC Healthcare colleagues, one and all, for sharing so much on-target healthcare thought and continuing the conversation.

One theme that appeared during the session was a topic we all care about – healthcare data. A topic that has been done, re-done, and done again! We’re still not at a point of agreement on who owns medical data/records. Ken Terry says it very well in Patient records: The struggle for ownership from 2015:

There is no consensus on who owns medical records. The Health Insurance Portability and Accountability Act (HIPAA) does not specify ownership, and state laws are inconsistent. Only New Hampshire has a law stating that patients own their medical records. In 20 other states, providers own them. The rest of the states have no legislation addressing the matter, according to an analysis of state laws by Health Information & The Law, a project of the George Washington University’s Hirsh Health Law and Policy Program and the Robert Wood Johnson Foundation.

We’ll keep in mind the state and federal regulations are evolving, but no national or international consistency has materialized to date.

Taking this back to Medicine 2.0 in 2009, Dave deBronkart @ePatientDave spoke it most clearly:

You wouldn’t be faulted for thinking that in the intervening almost eight years we would have created a system of governance and control that would answer Dave’s request with, “Of Course!” But you’d be mistaken. The confusion, impediments, and lack of interoperability remain par for the course.

One definition of data ownership from technopedia:

Data ownership is the act of having legal rights and complete control over a single piece or set of data elements. It defines and provides information about the rightful owner of data assets and the acquisition, use and distribution policy implemented by the data owner.

In You should control your own health care data, Niam Yaraghi of the Brookings Institution argues:

If patients were given the option to make informed decisions about their privacy and selectively disclose their identifiable medical information to the parties of their choice, the medical and economic value of their data would increase significantly. More importantly, patients themselves could receive a fair share of their benefits, both medical and financial.

We have a long way to go. A few days ago I posted a provocative Tweet dealing with the nuance of data ownership, perhaps reflecting where we are today in regard to healthcare data.

In the ensuing discussion, some agreed with this statement while others felt it was a false equivalence – and the question itself should be reframed:

The conversation turned to data format and the implications therein:

Once data format was mentioned, Edward Bukstel @ebukstel shared his great article on HL7, FHIR, Multiple Standards and Formats: One Healthcare Blockchain – definitely take a look.

Discussing these perspectives on healthcare data access and ownership reminds us that a workable solution must cover:

• Privacy and informed consent
• Control of the data (and the implications that holds for ownership)
• Financial benefits for the system and the patient
• Health benefits of proper data stewardship – both micro at the patient level and macro at the population level
• Secure data storage, access, transfer, and format solutions

I’ll leave you with a seminal example of the issues surrounding privacy, informed
consent, control of the data, and population-level benefits. In The Immortal Life of Henrietta Lacks by Rebecca Skloot, we learn about the very real implications surrounding informed consent:

Henrietta Lacks was born on August 1, 1920, in Roanoke, Virginia. Lacks died of cervical cancer on October 4, 1951, at age 31. Cells taken from her body without her knowledge were used to form the HeLa cell line, which has been used extensively in medical research since that time. Lacks’s case has sparked legal and ethical debates over the rights of an individual to his or her genetic material and tissue.

Please join the #hcldr community – including everyone with an interest in improving healthcare, on Tuesday, April 25, 2017 at 8:30pm Eastern (for your local time click here) as we discuss the following topics:

• T1: Does denied or hindered access to your healthcare data equal ownership denied? Why or why not?

• T2: Does actual ownership of healthcare data matter or do we need to reframe the entire discussion? Example?

• T3: What benefits/risks do you see in a fully-realized healthcare data governance policy that covers patients’ rights & providers’ needs?

• T4: What solutions do you see as viable for data access, storage, security, and portability? Format wars?

 

Resources for Further Study

Cooper, Tim, and Kuangyi Wei. “ Whose Data Is It, Anyway? | Accenture Outlook,” 2015. https://www.accenture.com/us-en/insight-outlook-whose-data-anyway.

deBronkart, Dave. “Videos.” E-Patient Dave, September 26, 2009. http://www.epatientdave.com/videos/.

Jones, M.D., Kyle. “Doctor or Patient? Who Owns Medical Records? : Fresh Perspectives,” January 18, 2016. http://blogs.aafp.org/cfr/freshperspectives/entry/doctor_or_patient_who_owns.

JUCM. “Who Owns Patient Medical Records?” Journal of Urgent Care Medicine, March 27, 2017. https://www.jucm.com/owns-patient-medical-records/.

Lagasse, Jeff. “Healthcare Predictive Analytics Market Should Hit $19.5 Billion by 2025, Research Shows.” Healthcare Finance News, November 28, 2016. http://www.healthcarefinancenews.com/news/healthcare-predictive-analytics-market-should-hit-195-billion-2025-research-shows.

Moorhead, Joanna. “Henrietta Lacks: The Mother of Modern Medicine.” The Guardian, June 23, 2010, sec. Science. https://www.theguardian.com/science/2010/jun/23/henrietta-lacks-cells-medical-advances.

“Open Data Standards: Let’s Get This Straight – The Journal of Healthcare Contracting,” June 10, 2016. http://www.jhconline.com/open-data-standards-lets-get-this-straight.html.

Singer-Vine, Jeremy. “The Consent Conundrum.” Slate, February 2, 2010. http://www.slate.com/articles/health_and_science/medical_examiner/2010/02/the_consent_conundrum.html.

Terheyden, Nick van. “Moving to Patient Centered Systems.” Dr Nick – The Incrementalist, April 21, 2017. http://incrementalhealthcare.com/patient-centered-systems/.

Terry, Ken. “Patient Records: The Struggle for Ownership.” Medical Economics, December 10, 2015. http://medicaleconomics.modernmedicine.com/medical-economics/news/patient-records-struggle-ownership.

“What Is Data Ownership? – Definition from Techopedia.” Techopedia.com. Accessed April 25, 2017. https://www.techopedia.com/definition/29059/data-ownership.

“Who Owns Medical Records: 50 State Comparison | Health Information & the Law.” Accessed April 25, 2017. http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison?utm_content=bufferd9db5&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer.

Yaraghi, Niam. “You Should Control Your Own Health Care Data | Brookings Institution.” Brookings, February 17, 2016. https://www.brookings.edu/blog/techtank/2016/02/17/you-should-control-your-own-health-care-data/.

 

Photo Credit: http://imgur.com/a/JhTpL