Should companies have the right to collect, use and share data about individual consumers who buy their products or use their services? What about when the “company” is an industry like health care, where electronically capturing the details of medical histories and care plans is now standard practice? We asked Dan McLaughlin, Director of the Center for Health and Medical Affairs, for his view on this rapidly changing landscape.
How is medical data being using today and is any of it being kept private?
Until recently, all medical records data was stored on paper. This data is considered private and is protected by a complex set of regulations which are a part of Health Insurance Portability and Accountability Act (HIPAA.) In 2009, Congress passed the American Recovery and Reinvestment Act, which provided funding for hospitals and clinics to convert to electronic health records. As a result, 80% of hospitals and 50% of clinics now have electronic records systems.
In addition to being used by the hospital or clinic that collects it, data is also used for financial purposes, like billing, and external reporting to mostly government agencies. For example, I was at a conference two years ago where HealthEast stated that they had to report over 1,000 numbers per month to external agencies. These systems are still subject to the HIPPA rules and most electronic health systems also have elaborate electronic security measures as well.
How can data collection lead to better quality of patient care? Are there potential drawbacks to this?
Before coming to UST, I worked in hospital administration at HCMC. One of the big challenges we had was the paper chart, as it was frequently needed by multiple departments at the same time. This may seem like a mundane issue but it led to poor patient care in some cases. The electronic health record solved this problem.
One advantage is real time clinical decisions support. If a physician enters prescriptions for a number of drugs for a patient, the computer does an analysis and, if appropriate, sends a warning message about potential adverse drug interactions to the doctor. Cost effectiveness is also improved. In Minnesota, all hospitals agreed to install a high-tech imaging decision support app to their systems. This looks at orders for any expensive imaging (e.g. MRIs or CTs ) and suggests lower-cost alternatives based on the patient’s condition.
One drawback to these systems is that are they are expensive and have not yet shown a clear ROI. Another is that the human-computer interface is awkward, but this is improving.
What are some recent advances in using patient data for larger-scale research projects?
Because many organizations are now collecting clinical data, some exciting innovations are underway – a leading example is Optum Labs. Optum is a part of the United Health Group which has health insurance records on over 150 million individuals. They partnered with Mayo Clinic and other large providers to merge their data to establish a comprehensive database for clinical researchers. The data is all de-identified and is protected by the HIPAA regulations.
This is a huge asset to medical researchers who want to determine the efficacy of drugs and treatments. In the past these studies were done manually and took many years to complete. With the Optum labs database these projects are now being done quickly and inexpensively.
Can people who want to be private keep their records truly private anymore? Are there risks for individuals who have their records shared if they are receiving treatment for medical issues that may still carry a stigma?
Most medical data the will be used for research requires an “opt in” from the patient. However, the use of medical data by an organization for quality improvement and other studies is permitted. One improvement in privacy that electronic records have over paper records is that the computer system records who is looking at each field in the record. For example, some employees of Los Angeles-area hospitals were fired for looking at the records of celebrities admitted to their hospitals. These employees had no legitimate reason to make the inquiry and were identified through the computer system.
Other than curiosity it doesn’t appear that there are monetary reasons to break into these systems and steal clinical data. For many years some diseases were stigmatized such as HIV, substance abuse, and mental illness. However these conditions have now become more broadly accepted as legitimate illnesses (not character flaws) and they are also protected by anti-discrimination laws. Therefore it seems there is no strong incentive to break into electronic healthcare systems to obtain private medical data.
An emerging issue is the use of healthcare information by employers. Are programs like biometric screening ethical? Do they work?
Many employers have installed biometrically based wellness programs. If an employee signs up they can receive a substantial discount on the cost of their health insurance if they meet certain targets. These targets usually include normal blood pressure, cholesterol, BMI, and no smoking. The discounts can be substantial – $500 to $2,000 per year. Early research showed that these programs did reduce the cost of employer sponsored healthcare but recent research has provided more equivocal results.
Some employees question these programs as an invasion of their privacy and as coercive because of the substantial funds involved. Recently the Equal Employment Opportunity Commission brought suit on behalf of two Honeywell employees, alleging that biometric testing is compulsory in practice and violates several antidiscrimination laws. The final results of this suit will have significant impact on the future of these wellness programs.
Where do you see analysis of patient data heading in the next five to ten years? How is it going to change the health care industry over the long term?
Information is the core to the delivery of quality health care. The advent of electronic health records is a significant resource for research and it is also the chassis for the redesign of health care delivery itself. The current model of making appointments, driving to the clinic, sitting in the waiting room, and seeing the doctor is over 100 years old. Creative healthcare leaders and entrepreneurs are redesigning this system around these new technologies and the healthcare delivery system will look significantly different within five years.
We are part of this transformation and we are developing a new program in healthcare analytics for our students. These new courses will focus on process improvement/redesign with technology, data mining, cognitive computing and, of course, privacy.
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