When it comes to sharing information to help discover new treatments, patients are generally open to provide organizations with their personal health data, but they are more willing to share data with some types of researchers than others.
A report from PricewaterhouseCoopers' Health Research Institute found patients are most willing to share information with their own physicians — 88 percent said they were very or somewhat willing — while just 53 percent said the same for sharing health data with drug companies. Seventy percent said they were willing to share health data with a university research center, and 78 percent would share data with their local health system or hospital.
However, when it comes to the types of data patients would be willing to share with pharmaceutical companies and regulators to help them improve care, there was less variation. Patients would share certain types of health data about 60 percent of the time with researchers, according to the report.
More specifically,
- Fifty-nine percent said they would be willing to share specific activities that are important to them but limited by their conditions
- 63 percent said they would share daily symptoms and the risk factors and benefits they consider when making treatment decisions
- 64 percent would share what an ideal treatment looks like
- 68 percent said they'd share how well current treatments work.
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