with their doctor
with their health plan or hospital
with state/public health agencies
with pharmaceutical companies
Ultimately, patients want to contribute to the bigger picture, they want better care for their disease and new treatments. The resistance comes from the use of data in a non-transparent way, in ways that weren’t made clear from the beginning.
Open exchange of data, including with competitors, would empower all actors to tap into the significant potential for value creation. Patients who make their data available should be able to benefit as a result. Not only directly as individuals but also indirectly by ensuring that the data is used to create maximal quality of life for patients.
Cost of healthcare
It is a privilege to work with patient data. We need to treat that data with respect, ensuring protection of patient privacy and prevention of unauthorised access. But we should also be transparent with patients about our goals: Finding answers to the most important scientific questions is the prime reason why we are collecting data.
Healthwatch England How do people feel about their data being shared by the NHS? (2018)