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When a patient fills a prescription at a major pharmacy, a record of that prescription (minus the patient name) is sold to companies – so-called health information organizations – that pool information from multiple pharmacies. The bundled information is combined with individual physician identities purchased from the American Medical Association to create prescriber profiles (name, specialty, practice site, which and how many prescriptions written, etc.) that are sold to the drug companies. Drug companies then give the information to their salespeople, who use it to tailor marketing strategies, messages, gifts and other inducements for individual physicians.

Physician organizations, patient advocacy groups, and legislators have highlighted problems associated with data mining and have taken steps to minimize its use for commercial marketing purposes in the following states:

  • New Hampshire: The Prescription Privacy Law (2006) prevents patient and prescriber identifying data from being sold or used for advertising, marketing, promotion or any activity intended to influence sales or market share of a pharmaceutical product http://www.gencourt.state.nh.us/rsa/html/XXX/318/318-47-f.htm). The law was passed as a consumer protection and public health measure, and seeks to ensure privacy in prescribing.
  • Vermont: As part of a comprehensive package to control the costs of prescription drugs and regulate inappropriate marketing tactics, Vermont recently passed legislation that provides strong privacy protections by limiting the use of personally identifiable prescription information for marketing purposes unless doctors and other health care providers explicitly agree to waive the protections. The law includes a physician opt-in provision at the time of licensure or renewal. This provision, managed by the state’s professional licensing board, allows a prescriber to choose to have his or her identifying information used for marketing and promotion of prescription drugs. The Vermont Medical Society supports the measure.
  •  Maine: Maine also passed legislation requiring its Board of Licensure to include confidentiality protection of prescribing data as part of its licensure and license renewal process. The Board must inform applicants that their prescription drug information is used for marketing purposes and how the prescribers may “opt out,” a weaker alternative to the prescribing data protection systems in Vermont and New Hampshire.

Other states, including Hawaii, Maryland, Massachusetts, Nevada, New York, Washington, and the District of Columbia, have introduced legislation in 2009 to limit datamining. All existing or proposed legislation restricts only the sale and use of patient or prescriber data specifically for marketing or commercial purposes. They do not restrict the sale and use of such identifiable data for other purposes, including for insurance reimbursement, dispensing prescriptions, utilization review, public health research, law enforcement purposes, controlled substances monitoring, adverse effects reporting, or compliance with Medicaid or private insurance formularies and rules.

(Courtesy: The Prescription Project of the Pew Charitable Trusts)

 Analysis

The impact of datamining in the bleeding disorders community is still uncertain. Legitimate reasons for the collection of research data continue. However, efforts to collect data meet skepticism when community members believe that the data collected will be used to pervert their health in the name of profit. Greater transparency among all vendors serving the bleeding disorders community, addressing their individual data collection processes is warranted in light of governmental pressures.

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