Are some consumers willing to sell their personal health information? It looks like the answer is “yes.” This week, I presented a paper at the IEEE International Conference on Data Mining in Shenzhen, China. This paper summarized the results of an online survey about consumers’ willingness to share de-identified health information, and whether their attitudes would change if a financial reward was offered. Here’s the abstract:
To realize preventive and personalized medicine, large numbers of consumers must pool health information to create datasets that can be analyzed for wellness and disease trends. To date, consumers have been reluctant to share personal health information for a variety of reasons. To explore how financial rewards may influence data sharing, the concept of Markets of Data (MoDAT) is applied to health information. Results from a global online survey show that a previously uncovered group of consumers exists who are willing to sell their de-identified personal health information. Incorporating this information into existing health research databases has the potential to improve healthcare worldwide.
During the presentation, I argued that patient populations for both rare and common diseases can look similar, especially when looking at disease subtypes. When considering relatively common diseases such as diabetes, schizophrenia, and autism spectrum disorders, a single hospital in the U.S. will not see enough patients for a given disease subtype to make meaningful conclusions. On average, U.S.-based hospitals do not have enough patients to solve disease questions without sharing health information.
For this survey, a global panel of 400 participants was selected at random by AYTM, an online market research tool. Questions were based on a previous health information sharing survey, with additional questions about sharing with financial reward. I received 400 responses from 59 countries in less than two hours. U.S.-based respondents overwhelming believed that their health information was worth more than $1000, but the global average was around $250 when the U.S. was excluded. For these participants, both their motivation and the amount of data shared increased with financial reward. Keep in mind that these participants were paid to respond to the survey, so they represent a kind of self-selected group. Nevertheless, monetizing health information sharing produced a surprising result, demonstrating that an alternative source of health information may exist for research purposes.