TEDMED: Information donation would give data a “second life”
If health data are a valuable resource, why not donate it like blood?, Amy Abernethy, MD, director of the Center for Learning Health Care, Duke Clinical Research Institute, asked an audience at the TEDMED conference on April 17.
Abernethy’s belief is that people should act as stewards of their own information, which they could share and distribute to enable scientific research. “We need a mechanism, something that we trust, that allows us to aggregate our health information and carefully share it onwards,” she said.
Abernethy envisions individuals inputting their information into user-friendly technology such as a website or mobile app. This data could be shared in clinical settings, or at “info drives” or “info mobiles,” much like blood donations, she said.
“We need to be thoughtful about the information that is collected,” Abernethy said, stressing the importance of incorporating both hard data measurements and more qualitative feedback on how a person is feeling and what is meaningful to them.
The information could play a crucial role in building large data sets, as it would be aggregated and pooled across many patients. Health information donors could use a checklist to choose particular causes to donate their data, or just use then for their own personal and family research, she said.
“The donated information could be part of a shared resource for learning and research. It would accelerate connection and meaning and reinforces impetus to donate,” she said. “Data is a non-depletable resource. The more we make use of it, the more valuable it becomes.”
Like donating, the act of providing information-–at whatever level of anonymity desired–-could inspire pride. “I want to be proud,” she said.
She relayed the story of one of her melanoma patients, Janet, who wanted researchers to use her health data to help sort out any heredity cause for her family’s benefit, but also to further research.
“This was her treasure, her gift, her pearls. She saw the value of contributing her information,” Abernethy said.