Healthy Skepticism Library item: 19950

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: Magazine

Fleming K
Data on-sale is a patient turn-off
Medical Observer 2005 July 293

Full text:

Three in four patients would change doctors in they discovered their GP on-sold patient data without their consent – whether it was de-identified or not, an AMA survey has revealed.

Almost half of patients also held strong concerns about GPs profiting from the on-sale of data.

More than 60% of 1001 people surveyed said they would not permit their GP to release their de-identified data for commercial purposes, but 67% would consent for medical research.

Those surveyed were split on data being provided for government purposes – 45% would consent, 46% would not.

AMA president Dr Mukesh Haikerwal said the poll offered a closer look at the grey area highlighted by the recent controversy over GPs releasing de-identified records for financial reward.

Ethical concerns were sparked earlier this year when about 300 GPs accepted money or gift vouchers to provide de-identified to pharmaceutical research firm CAMM Pacific through a tool on their Medical Director software.

The poll found patients wanted GPs to seek permission before providing their de-identified data for medical research (81%), government purposes (78%) and commercial purposes (79%).

Many were also slightly or very concerned about the security of the information (72%), the de-identification process (60%), the doctor profiting (62%) and businesses profiting (66%).

Dr Haikerwal said confidentiality was the basis of the doctor-patient relationship, and GPs should tell patients how information would be used and who would benefit.

Sydney GP Dr Jodhi Menon had previously told Medical Observer that selling de-identified patient data was a legitimate and ethical way to supplement a doctor’s income and did not compromise the relationship with patients.

Patients could be involved in the de-identification process and most would rather see their GP profit from the sale than another business, he said.