The Data Dilemma
We Want Data to Improve Our Lives, But Data Can Be Used For Our Detriment
I previously discussed the issue of technology companies using different techniques to pull in your data to then later sell it. I called this practice databaiting. Since I had seen 23andMe attempting to get people to submit their DNA through providing an overview of your percentage or heritage I thought that would be ideal data to aggregate (gather) and sell. As was to be expected this was indeed the case, to my friend’s somewhat fright and sadly to my schadenfreude (skadefryd in Norwegian — damaged happiness). I think the moral of the story is the lacking sense of morality for certain large technology companies.
Databaiting I would suggest is: to entice someone to submit their data by eliciting an emotional response.
Should I be Concerned?
Last summer in 2018 GlaxoSmithKline purchased a $300 million stake in the company 23andMe. GlaxoSmithKline’s annual revenue is 30.82 billion GBP, so this was a manageable investment. GlaxoSmithKline plc is a British multinational pharmaceutical company headquartered in Brentford, London. Established in 2000 by a merger of Glaxo Wellcome and SmithKline Beecham, GSK was the world’s sixth-largest pharmaceutical company as of 2015, after Pfizer, Novartis, Merck, Hoffmann-La Roche, and Sanofi.
A recent article suggests that Amazon, Walmart, and Best Buy are going into the health care industry. Amazon is going into health insurance. Health insurance: Last year Amazon announced “Haven” which is a joint venture with Berkshire Hathaway and JPMorgan Chase. In 2018 Amazon acquired online pharmacy PillPack for $1 billion. It must be said that Amazon is incredibly good at using data analysis and recommendation engines, and this is now being implemented in selling meds. Although the article in Inc claims: “And that makes it obvious who the real winners are in all of this: you and me.” However, this statement is of course questionable.
Should you be concerned? Yes, however, we want healthcare to improve and data seems important in this regard. Health data can be analyzed: “…once data has been freed from proprietary servers…”. This, however, is not completely unproblematic when it can be used to push more medicine. Especially when privacy companies are being acquired. Veeva Systems a cloud-based software platform for the global life sciences industry, is to acquire Crossix Solutions, a New York based provider of privacy-safe patient data and analytics solutions, for $430M.
If your family DNA can be aggregated it can be bought. If your privacy platform can be listed it can be bought. Crossix, the acquired company, provided an analytics platform that connects health and non-health data for more than 300 million U.S. patients to drive ‘marketing effectiveness’. The company serves more than 775 customers, ranging from the world’s largest pharmaceutical companies to emerging biotechs.
Getting Your Health Data
I have seen a few organisations ‘freeing up health data’. I have seen a few organisations who attempt to do this, particularly in the US.
In Fast Company there was an article titled: “What you don’t know about your health data will make you sick,” as part of a series called The Privacy Divide. This series explored the fault lines and disparities–economic, cultural, philosophical–that has developed around data privacy and its impacts on society.
This mentions another actor namely data analytics giant Optum, which is owned by UnitedHealth Group, Inc. This company has since 1993 captured medical data — lab results, diagnoses, prescriptions, and more — from 150 million Americans (about half of the US population anno 2019). These are often stuck to health insurance contracts that can use them to influence your insurance rate.
There are regulations, however in opposition we have “shadow health record” — that according to Fast Company can include credit scores, court documents, smartphone locations, sub-prime auto loans, search histories, app activity, and social media posts. These can include devices such as phones and wearables that are close to your body measuring your movement or pulse.
Amazon Echo can have a connection to a calendar full of doctor’s appointments. Google Nest’s thermostat can count if a woman is experiencing hot flashes due to menopause. Lastly in the Fast Company article, it was said:
“The health data market was approximately $14.25 billion in 2017, according to BIS Research. The firm predicts that in just under seven years — by the end of 2025 — the market will grow nearly five times bigger, to $68.75 billion.”
Should you be concerned?
The Data Dilemma
We want data to improve our lives, but it can be used for our detriment.
We want to submit health data as an example to improve a service or simply to save lives. Yet this requires a high degree of responsibility from all the companies involved in governing data to ensure that this is done correctly. If correctly means extracting as much ‘value’ from each data point making sure you pay a premium for your insurance or health services this is the opposite end, the other extreme so to speak. Trust is being broken, and if so people could die when unwillingness to share decreases due to continued exploitation. The goal for some is to ‘democratise’ health care, however, can we do so without democratising and making transparent data contributions or ownership?
This is day 119 of #500daysofAI. If you enjoy this article please give me a response as I do want to improve my writing or discover new research, companies and projects.
