Report: Groups Mine Health Data Without Individuals’ Knowledge
A new California HealthCare Foundation report finds that third parties often can access individuals' personal health data by searching "big data" from mobile phones, credit card activity, Internet use and other sources, the Central Valley Business Times reports. CHCF publishes California Healthline.
Such data give firms "the potential to paint a detailed health profile of individuals, as well as to describe whole communities based on location, health conditions or other factors" without the affected individuals' knowledge, according to the report (Central Valley Business Times, 7/15).
According to the report, consumer data available for purchase and analytic use include:
- Contact information;
- Demographic information;
- Financial and credit data; and
- Information on lifestyle, interests and activities.
The use of such data by third parties could present privacy concerns because of:
- Firms' profit-focused intentions;
- HIPAA restrictions;
- The potential re-identification of de-identified data; and
- Use of "dark data," or data that individuals are not aware are being used.
However, the report noted that data mining also could lead to improvements in:
- Chronic disease management;
- Clinical trials;
- Harnessing self-tracking for academic and research purposes;
- Increasing focus on individual health goals;
- Predicting and tracking epidemics; and
- Alignment of retail customers' demands with health care industry.
According to the report, the benefits and challenges of data mining should be balanced by:
- Ensuring that individuals have control of their data;
- Simplifying the complex regulatory framework for data mining; and
- Using personal health data lockers or clouds (CHCF report, July 2014).