Health-Related Data Mining Growing; Lawmakers Consider Action

September 12, 2014 in News

Data mining companies are using social media websites, health-related mobile applications and medical websites to collect health information on tens of millions of U.S. residents, Bloomberg reports.

Overview of Health-Related Data Mining

According to Bloomberg, data aggregating firms are using consumers’ online activity to acquire information about their medical histories and pharmacy purchases. That information then is used to create directories or lists categorized by diagnoses or symptoms. For example, some of those directories include:

  • A list of 2.3 million cancer patients;
  • A list of 14 million individuals who suffer from depression; and
  • A list of 600,000 homes in which a person has autism or attention deficit disorder.

Such directories generally sell for about $0.15 per name. For an additional cost, the lists can be broken down into different subsets, such as:

  • Ethnicity;
  • Income level; and
  • Place of residence.

According to Bloomberg, one of the most common ways consumers’ information ends up on such lists is by individuals sharing health information through online or mailed surveys or by providing feedback through customer reviews.

That information then is sold to data brokers that repackage and resell the data.

Regulation of Health Care Data Mining

In February, Sens. Edward Markey (D-Mass.) and Jay Rockefeller (D-Va.) introduced a bill (S 2025) that would allow individuals to see what data companies have collected on them and make it easier for consumers to opt out of being included in such directories.

Further, the Federal Trade Commission in May recommended that Congress place tighter restrictions on data mining of health care and other sensitive information to ensure consumers are aware of the information being shared.

However, data mining firms argue that the information they sell is secure and only includes data that consumers want to share with marketers, Bloomberg reports.  

Direct Marketing Association Vice President for Government Affairs Rachel Nyswander Thomas said, “We have very strong self-regulation,” adding, “Regardless of how the practices are evolving, the self-regulation is as strong as ever.”

Meanwhile, Gary Laben — CEO of KBM Group, which is one of the largest collectors of consumers’ health data — said, “Our business is about creating mutual value and if there is none, the process doesn’t work.” He added, “None of our clients wants to engage with consumers or businesses who don’t want to engage with them” (Pettypiece/Robertson, Bloomberg, 9/11).

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