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Data usage agreements and the new normal

By Mark Watts

This is my third revision of this article. I cannot seem to keep up with the pace of change in the health care provider-information technology giant corporation partnership development. Is your health care data being sold out the backdoor?

My second version was scrapped after I reviewed the announcement that the five British National health trusts have signed a partnership with Google to process sensitive patient records.

I received a call from a peer asking me about my knowledge and advice on signing a new contract with an established and trusted IT vendor. He said he noted a new clause, the vendor wants rights to the data. All contracts are subject to modification, I said he should remove the clause. The conversation ended but mine and our awareness of this potential new threat to you and our patients’ data is just beginning. I called a salesman from the IT vendor and he said that he was “surprised at how many people just sign the agreement, that they will give in exchange for free use of the data some comparative performance reports vs. peer in health care.”

HIPAA will protect us? In 1996, the Health Insurance Portability and Accountability Act (HIPAA) was signed into law to improve health care workflow. Google was founded September 4, 1998. In an Artificial Intelligence showcase, IBM Watson won Jeopardy in 2011. The laws that are written before the lightspeed change in technology cannot be seen as meaningful protection. We as shepards of health care data must be thoughtful and aware of its value and the unintentional exploitation of patients. Data is the new oil.

We quickly sign agreements with large information technology firms so that we can enjoy the benefits of their products. We do not pay directly for a Google search. We do give up information that is monetized. I searched for Greek cruises for my anniversary. Then, I find cruise offers popping up on my next search. This is an understood exchange of value. How are things different today? Why am I concerned?A noted thought leader on health IT stated that today, unlike any previous time in American health care history, more patient data is under the stewardship of for-profit health care systems than academia. Pair that with the move to offsite cloud IT infrastructure and it means more patient data is primed for exploitation by Artificial Intelligence applications. A perfect storm, profits+data+technology.

At RSNA 2019, it was announced that a well-know IT solution provider was shifting to a new all-cloud solution and had signed one of the largest for-profit health chain as a client.

The CIO of the health chain company was moving all imaging data to the cloud to control costs for his company.

The IT solution provider was partnering with Google to control the cost of providing the all-cloud services.

Google was getting access to one of the largest medical imaging data sets ever created and being paid to do it. Google could not pay to collect this much information. The point of awareness is that this is happening through a business agreement license and data usage rights provided by the health care entity. The IT solution partner now can use the data without the consent of the patient as expressly dictated in the HIPAA law. Money laundering of data.

In my next article, I will cover why large data sets are so important for the development of AI machine leaning and how to correctly present protected health care information for research.

The new normal is that companies that monetize data are in a land grab for health care data. Why you may ask? Here is one example: If my grandfather had a CT performed in order to rule out dementia and I was to go and purchase a long-term heath policy, would the company like to know my grandfather’s medical history before the underwriting? Would my coverage be triple the cost even if my grandfather did not have nor ever developed dementia?

The people who wrote the HIPAA laws did not and could not have known how quickly technology would develop so that the patient would not be able to maintain the protections HIPAA intended.

My goal is to raise awareness of this rapidly changing dynamic and give you a reason to read your renewal contracts one more time before signing. •

Mark Watts has over 20 years as an imaging professional with vast expertise in imaging informatics and IT issues. He has served in many roles in both hospitals and industry as a health care vice president, imaging director, and IT consultant. His knowledge and experience in the convergence of IT and imaging has made him a sought after author, speaker and consultant. He has authored a textbook on informatics and was a pioneer in the adoption and development of PACS and VNA technologies.

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