Experts say that greater access to large volumes of personal health data could transform medical research, but several obstacles are hindering such access, the Wall Street Journal reports.
Collecting Data
Clinical laboratories, hospitals and other health care providers often collect patient data, but the information is not representative of the general population because it comes from individuals seeking care for health conditions.
However, experts note that new technologies could help researchers collect data from a population sample that includes healthy individuals. For example, mobile health applications on smartphones and wearable sensors could record a user's health information for research purposes.
Shamus Husheer -- CEO of Cambridge Temperature Concepts, which makes a product that records body temperature changes to help women with fertility problems -- said such technology "allows us to build up profiles of illnesses without ever setting foot in a hospital." He added, "More importantly we can see what those illnesses look like in the general population who are otherwise normally healthy. People who have a cold don't go to the doctor. Where else are you going to get that data?"
Kaveh Safavi -- who leads Accenture's health practice for North America -- said the ability to access health data from a large population sample could help researchers "see information across time" and identify patterns, especially when looking for "low-frequency events" that might be hard to detect in a smaller study group.
Barriers to Using the Data
Despite the potential benefits of increased access to personal health data, experts note that several obstacles are hindering the use of that information for research.
For example, federal law places stringent restrictions on the sharing and storage of personal medical data.
In addition, Chris Edmonds -- managing director of Replay Digital, a company specializing in medical smartphone apps -- said it often is difficult to convince consumers to share their health data. He added that mobile health apps need to provide incentives to help a user feel rewarded for entering his or her health data (Rooney, Wall Street Journal, 1/19).