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article imageData scientists, doctors learning to seek consent

By Edgar Wilson     Feb 9, 2016 in Health
People don’t mind sharing data when they can be partners in its management and application.
That is the major takeaway from a recent study conducted by the Society for Participatory Medicine.
The survey asked American patients whether they would be comfortable allowing a wearable device to measure certain basic biometrics (like heart rate, blood pressure, etc.) and communicate those readings directly to a partnering physician. A majority of respondents said they would be comfortable with that arrangement, in the interest of increasing engagement with their treatment, as well as managing their health between visits.
At the same time that increasing scrutiny is being leveled against both public and private methods of tracking, spying, monitoring, and other forms surreptitious data-gathering, this study demonstrates that people recognize Big Data itself, in the right hands, can be a useful, valuable tool.
Although America’s federal government has been a subject of many criticisms of eavesdropping and data-gathering, it has also been on the forefront of promoting the medicinal value of large-scale analytics projects.
Big Data has been receiving growing attention from President Obama’s White House, from the establishment of the new Office of Data Science to repeated endorsements of Precision Medicine as the best way forward in finding a cure for cancer. That Obama made a point of reiterating his ambition to support cancer research — explicitly equating it with President Kennedy’s charge to land an American on the moon — underlines just how high expectations are for data science to transform healthcare.
This recent study seems to suggest that public opinion is broadly on Obama’s — and Big Data’s — side, at least when it comes to healthcare research and personalized medicine.
The positive reception here may be a result of two things that historically have been present in other individual tracking and data-gathering initiatives.
The national security argument behind massive data-gathering operations was doomed from the start, because it was only after the process was in place and thriving that any public explanation was given justifying the program’s existence. Edward Snowden’s revelation of the scale and degree of government eavesdropping and individual monitoring started a conversation not about the potential of data analytics so much as about privacy, individual rights, and government overreach.
Physicians bringing Big Data into the consultation space through the use of wearable technology isn’t an invasion of privacy, nor is it an effort to extract more healthcare spending from patients. On the contrary: as presented in the study, it is an attempt to increase much-needed engagement.
Clinicians have long struggled to make patient lifestyles better align with patients’ broader health needs and wellness goals; as value-based incentives become the norm and the entire U.S. healthcare system shifts away from volume-based reimbursements, providers are looking for more, better tools to realize outcome improvements.
There is also a humanitarian component. A more robust, active pool of subjects provides researchers a new platform for designing intervention therapies and medications. As they learn more about modern environmental triggers and lifestyle indicators to help us better predict disease, governments will, by extension, be better equipped to monitor whole population health and respond to new diseases, even prevent outbreaks from becoming pandemics.
The remaining hurdle that remains to be overcome is ensuring such data can be securely gathered and shared among authorized personnel, without compromising the privacy of participants — and, by extension, a wealth of potentially valuable personal data. Even as enthusiasts tout the potential benefits of bringing Big Data analytics more prominently into the healthcare space, hackers and identity thieves are finding lucrative opportunities to exploit security gaps and weaknesses concentrated among clinical environments.
Despite the risks, there is a clear pivot underway that both providers and patients are ready to embrace. Given an explanation — and the opportunity to consent — up front, evidence continues to emerge that patients will get on board with allowing their personal health data to be gathered, shared, and utilized by scientists.
More about Privacy, big data, population health, Medical research, President barack obama
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