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As healthcare providers collect more data on patients than ever, and plan to use to predict care episodes, healthcare need to understand the ethical implications, according to experts speaking at the Predictive Analytics World Healthcare conference in Boston Tuesday.
Right now, the lines are blurry.
"We had a case we saved someone's life by looking at their Facebook page," said one doctor in attendance.
Another person in the audience said his healthcare system did research on patient balances, and found more women on the list than men. To not unfairly target women, gender was taken out of the model, even though they knew the result wouldn't be as effective.
The role of the consumer in collecting healthcare data, and the ethics of using the vast amount of online information to help a patient, were the focus of two forums at the conference.
"What is the balance between science and ethics?" asked Conference Chairman Jeff Deal.
One issue that contributes to inconsistent ethical standards is the lack of regulations around practices such as predictive analytics. That's because regulations have not caught up to technology, according to Ken Briggs, a healthcare attorney with Poisnelli.
Even "informed consent" is ambiguous, he said.
Dr. Michael Dulin, chief clinical officer for analytics and outcomes research at Carolinas Medical Center, said with limited resources, 1 percent of data that's more predictive can impact 10,000 lives.
"Transparency is really the right way to go," he said.
Ken Yale, vice president of clinical solutions ActiveHealth Management, said he could get data on everyone in the audience, from their cooking to mall buying propensity. But health information could be used make a patient better, he said.
Dr. Deborah Estrin, a computer science professor at Cornell Tech and professor of public health at Weill Cornell Medical College, said smartphones have played a major role in making patients some of the best sources of data.
"The challenge is making data actionable," Estrin said.
Already, there are several apps that are being used to capture healthcare data on a patient.
Photographic Affect Meter, or PAM, can be used by healthcare professionals to assess a patient's mood. The app shows images ranging from a puppy to a mad alien. Tapping on one communicates mental well-being.
Another app, YADL, or Your Activities of Daily Living, assesses pain level. Instead of being asked on a scale of 1 to 10 about their level of pain, patients tap on photos showing their comfort and mobility range, from putting clothes in a dryer, walking up steps, or taking the dog for a walk.
Then, of course, there's ResearchKit, announced by Apple this spring, that reaches out to people to engage them in research studies, and Fitbit, the popular exercise and sleep monitor.
"This is one step towards the use of data in actual clinical care," Estrin said.
"As we move patients out of the hospital faster, and rely on home settings … we can build really useful tools from individuals fueled by their own data."