At a panel featuring health plan executives at the Health 2.0 Conference in Santa Clara earlier this month, one audience member posed the question of why patients should willingly give up their personal data when health insurers have previously used knowledge about risk factors like pre-existing conditions to deny coverage.
“How does that work if I know that if I share information I may be excluded or my premiums could be drastically increased?” she asked, drawing some applause from the audience.
Big data analytics in healthcare holds the promise to better identify and prevent disease, highlight personal risk factors and determine what specific care plan works best for individual patients.
On the other hand, the vast amount of data being produced and collected highlights major concerns about privacy and whether that information will be used in a discerning and benevolent matter.
Insurance companies have been at the forefront of this technological revolution. A recent investigation from ProPublica looked at how health insurers were collecting social and personal information including entertainment choices, social media posts, purchases and racial and ethnic background data to calculate health costs.
It comes as no surprise then, that there’s a resulting backlash from people unhappy about how their data is being used by insurers.
A survey from LendEdu found that a majority of people are against the combination of high level data and insurance, with 72 percent of respondents believing that insurance companies should not be allowed to use big data to determine risk for insurance policies.
However, it’s not as if people were completely against the sharing of information with insurers – especially if there was a potential benefit. When to comes to access to everyday health information, more respondents than not said they would allow insurance companies to access the data if it could possibly lead to a cheaper policy.
James Heidebrecht, the owner of insurance firm Policy Architects told LendEdu researchers that insurance companies who are motivated by mitigating risk are incentivized to collect and farm personal data from sources ranging from financial statements to online ordering or social media.
“Anyone sharing personal data with a life or health insurance company does so at their own peril. However, the cats out of the bag and it already may be too late,” Heidebrecht told LendEdu.
“Tech-dependent millennials live in a privacy-free world and an unbelievable amount of their data is available to be aggregated. The day is surely coming when it may be impossible to get insurance coverage of any sort without a company accessing your personal information.”
Even that “privacy-free world” has its limits, especially when considering more invasive data collection methods. More than 80 percent of survey respondents were against the installation of a home camera or a bio-metric tracker even if it could lead to a cheaper policy.
Genomics data is another interesting case explored by the study. According to LendEDU, 18 percent of respondents would be OK with insurance companies having access to their DNA if it meant they could qualify for a cheaper insurance policy.
“Although our respondents were really none too accepting of any of the hypothetical data-collecting practices, they were the most receptive towards the idea of allowing insurance companies to access their DNA to evaluate risk,” the report said.
Genetic data has already been used by some payers in limited instances as part of an attempt to try and control costs and boost outcomes.
Medicare Advantage insurer Clover Health has incorporated the technique to determine whether medication would lead to negative side effects or adverse effects for high-risk patients.
Another recently launched Medicaid pilot program in California called Project Baby Bear will provide rapid whole genome sequencing as a standard diagnostic for critically ill newborns in intensive care to help with diagnosis and treatment for the vulnerable pediatric populations.
“As with many other things in life, it’s best to find a balance. Insurance companies and consumers both benefit with tighter underwriting efforts but do we need to hire private investigators to monitor our every move?”? insurance agent Matthew Barr told LendEdu.
Photo: HYWARDS, Getty Images