A survey aimed at general citizens of the US and Japan about their attitudes toward electronic medical data handling.

objectivesTo clarify the views of the general population of two countries (US and Japan), concerning the handling of their medical records electronically.

methodsWe contacted people nationwide in the United States at random via Random Digit Dialing (RDD) to obtain 200 eligible responders. The questionnaire was for obtaining the information on their attitudes towards handling of their medical records, disclosure of the name of disease, secondary usage of information, compiling their records into a lifelong medical record, and access to their medical records on the Internet. We had also surveyed people of Shizuoka prefecture in Japan using same questionnaires sent by mail, for which we obtained 457 valid answers.

resultsEven in an unidentifiable manner, US people feel profit-oriented usage of medical data without specific consent is not acceptable. There is a significant difference between usage of unidentifiable medical data for profit (about 50% feel negatively) and for official/research purposes (about 30% feel negatively). About 60% of the US responders have a negative view on the proposal that unidentifiable medical information be utilized for profit by private companies to attain healthcare cost savings. As regards compiling a lifelong medical record, positive answers and negative answers are almost equally divided in the US (46% vs. 38%) while more positive attitudes are seen in Japan (74% vs. 12%). However, any incentive measures aimed at changing attitudes to such a compiling including the discount of healthcare costs or insurance fees are unwelcomed by people regardless of their age or health condition in both surveys. Regarding the access to their own medical record via the Internet, 38% of the US responders feel this is unacceptable while 50.5% were willing to accept it.

conclusionsParticipants from the US think that the extent of the sharing their identifiable medical records should be limited to the doctors-in-charge and specified doctors referred to by their own doctors. On the other hand, Japanese people find it acceptable for doctors of the same hospital to share their medical records. Even in unidentifiable manner, people in both countries think the profits resulting from the secondary use of medical records should be returned to the public or patients. With regard to compiling a lifelong medical record, participants from the US provided both positive answers and negative answers, while more positive attitudes were observed in Japan. However, any incentives or measures aimed at changing attitudes towards such a compilation, including provision of a discount on healthcare costs or insurance fees, were not welcomed by participants from US as well as those from Japan, regardless of their age or health condition.