A new healthcare big data privacy report – compiled by the federal government’s Health IT Policy Committee’s Privacy and Security Workgroup – has highlighted a number of concerns which must be addressed before the benefits of big data can be realized by the healthcare industry.
The use of big data in healthcare promises a myriad of benefits, which the government is keen to gain; but big data has caused big concerns, which the Whitehouse is trying to address. Big data has potential to reduce the cost of the provision of healthcare services, improve patient outcomes and improve the speed at which new cures can be developed. However, as numerous as the benefits are, they should not come at the expense of patient privacy, which must be assured at all times.
Big Data: Big Problem for Healthcare
The government has realized that the issues raised by the use of big data are difficult to address, and help has been sought from healthcare stakeholders to determine the best way to leverage big data, without violating the privacy of patients.
The Department of Health and Human Services is one agency that has been approached for assistance. Last year, President Obama requested help, asking the HHS to “consult with stakeholders to assess how federal laws and regulations can best accommodate big data analyses.”
The HHS responded by holding a series of meetings in which the main issues were discussed. President Obama also asked the HHS to “develop recommendations for ways to promote and facilitate research through access to data while safeguarding patient privacy and autonomy,” a process that is now well underway.
The first two meetings held by the Privacy and Security Workgroup sought opinions from 21 stakeholders, with the findings from these two meetings now having been compiled into the new healthcare big data privacy report that was announced in a recent virtual workgroup meeting.
Stanley Crosley, Co-chair of the Privacy and Security Workgroup, said “Patients should not be surprised or harmed by collections, uses, or disclosures of their information. Nowhere is this more difficult than with big data.”
While security of health data is a major issue, Crosley also pointed out that it is not just fraud and identity theft that are causing concern about big data use. Securing the data stored by healthcare providers is essential, but when that data is legitimately disclosed to organizations, in particular health insurers, there is considerable potential for harm to be caused to patients.
Big data could potentially be used to discriminate against individuals. If a health insurer is able to access patient data, the information could be used to discriminate. Insurance could be denied, or premiums could be increased as a result of the information gained. Crosley said this is one of the major challenges that is currently being faced.
Furthermore, current laws covering the use of big data are inconsistent. Discrimination against patients is prohibited, but “in some cases is expressly permitted.” These inconsistencies must be corrected. He explained that healthcare providers, which are covered by the Health Insurance Portability and Accountability Act’s Privacy Rule, are not permitted to use big data to discriminate against individuals. However, many non-HIPAA covered entities may have access to the exact same data, yet no laws prohibit the use of that data to discriminate against individuals.
He pointed out that there are cases where patients can benefit, but not without a cost. That cost is harm to patients, but there is no consensus on the definition of harm. Until that has been addressed it will be difficult to ensure that patients are not harmed by the sharing of their data.
The Privacy and Security Workgroup still has a considerable amount of work to do before it can issue its final healthcare big data privacy report, but the workgroup is confident that it will be able to publish the final report by the end of the summer.