Could Big Data become Big Brother?
Call it Big Data bloodlust: The more health information being generated by a growing contingency of apps, devices, electronic health records, mHealth sensors and wearables, the broader and stronger the desire for that data becomes.
And those are just sources of health information. What about data not traditionally considered part of healthcare that could be used either for or against a patient?
In numerous other industries, buying habits are already widely tracked by many social media sites and used for advertising. Though some have complained this is an intrusion, nothing much has been done to prevent this type of surveillance, so far.
“When you add the non-health information, it starts to make people uncomfortable,” Peter Edelstein, MD, chief medical officer at LexisNexis Risk Solutions told Government Health IT, adding that LexisNexis is approaching the use of data, and non-healthcare data in particular, very carefully, and with legal advice.
Plenty of data available, without social media
Despite the hesitancy by some analytics companies, including LexisNexis, to use social media data, plenty of non-healthcare data is already being used in healthcare today, whether consumers are aware of it or not.
A new report by the World Privacy Forum found that healthcare analytics companies are drawing from “a large roster of raw consumer data." According to report authors Pam Dixon and Robert Gellman, these include: retailer databases, financial sector non-credit information, commercial data brokers, multichannel direct response, online surveys, catalog and phone orders, warranty card registrations, Internet sweepstakes, retailer loyalty cards, lifestyle information gathered from fitness and wellness centers, and non-profit organization member or donor lists.
The WPF report said healthcare payers commonly use clothes shopping habits and prime time TV usage as health indicators, as well.
The future of America's health: prediction
Edelstein said LexisNexis taps some non-health data to provide a more complete picture to its clients — hospitals, accountable care organizations, providers and payers — all striving to improve population health, particularly with the advent of the Accountable Care Act.
LexisNexis currently uses court records and housing data to factor in to its population health management, he said. And the company also uses healthcare claims data to find the patients with the most healthcare costs in a given year. Statistically, these patients are at a greater risk of having a major health event the following year. Knowing this can help providers and provider groups to target them for prevention and awareness, according to Edelstein.
Non-health data can be a big help with Medicaid patients, in particular. If they are transient, have no phones, no permanent addresses, these patients are statistically at a higher risk for health problems, and therefore candidates for a more targeted outreach, he said.
What "happens" on social media, doesn't stay on social media
It’s hardly out of the question that someday soon the healthcare industry might want to tap into social media to find out more about patients’ health habits.
“Healthcare will eventually go there,” added Nav Ranajee, global solutions leader with IBM’s healthcare business analytics, “because the analytics are already there.”
Healthcare as an industry, in fact, is inching toward the use of combined analytics of biometrics, patient portal data, lab data, prescription records and public records.
“We’re moving here in baby steps,” said Kim Jayhan, senior director of LexisNexis healthcare transformation advisory group. “But we’re picking up steam.”
Jayhan said social media could perhaps provide a measure of “honesty” for predictive analysis, since patients are not always forthcoming with critical information to their doctors, especially information on their smoking, drinking, illegal drug usage and other risky behavior.
Should consumers worry?
When the day comes that social media is thrown into the Big Data pot, all the information so many in the industry are thirsty for could be used for better or worse.
For better: Most health data brokers would like to use it to fuel the federal "Triple Aim" of improving patient care to make for healthier populations while reducing costs for their health provider clients. And for worse: a case of Minority Report, the sci-fi movie wherein people are discriminated against based on predictive analysis.
Healthcare predictive analytics “deserves special attention and scrutiny," World Privacy Forum’s Dixon and Gellman contend.
Dixon and Gellman explained that Big Data is only in its infancy stage right now. But as the data business continues becoming more sophisticated, analytics will come down in price and the use of all sorts of data to determine a patient's health risk, called "consumer scoring" by the WPF, will gain prevalence.
Right now, Big Data is being used to score people for potential risk, Dixon and Gellman continued, to target them for more attention to prevent disease — but if those scores were to be used for discrimination it could have dire consequences for individuals, much like credit ratings did before they were regulated. The secrecy of the data being shared is the part society should worry about, they added.
"The data broker industry is complex, as is our digital world, as are the lives of all of us who live in this world,” Dixon testified at a recent congressional hearing. “But that is no excuse for avoiding the necessary discussions that will need to take place between all stakeholders.”