The Price Of Medical Data
The price of medical data means different things for different groups. To business, it means profits from selling it or increased efficiency through buying it for research and development. To doctors it often means increased burnout rates and a stressful work environment from transcribing electronic health records in the corner during what’s supposed to be a personal face to face visit with their patient. For patients it means having health problems and medical expenses to produce that data.
Medical data is supposed to be working for patients, but the best it currently does is help research further the development of medical science. Other than that, patients have no comprehensive health plans from their electronic health records, or often even have access to them at that. The very group that produces medical data, the commodity that generates big business billions annualy; is manipulated in the process. It doesn’t stop there. Insurance company’s are stockpiling that data to do their risk assessment and raise people’s insurance premiums. So not only do patients build the medical data market on their backs from their own diseases and medical expenses, but what is built, is used against them further.
Big data in medicine is campaigned as a save all futuristic solution for healthcare. While it has potential to acheive that, currently this isn’t the case for patients. Medical expenses are the leading cause of bankruptcy in America, that same cause of bankruptcy is what’s generating data. Healthcare is a beurocracy because it’s composed of politics, budgets, business, research, marketing, and so many other niches that make up the 3 trillion dollar U.S industry. It’s not a simple entity. While big data is very promising for healthcare, it needs to be harvested more transparently and used more ethically. The big data behind artificial intelligence needs to be designed around helping doctors instead of replacing them. There is plenty of utility in medical data however much like nuclear technology, it comes with great responsibility.
If you ask what the price of medical data is, you won’t get a regulated answer like you would for crude oil by the barrel or gold by the ounce. You’ll see a very broad range of prices from pennies per record on a geographic scale or you’ll see thousands per record on the black market. It all depends on whose buying and from whom. You have pharmacies, hospitals, electronic health record vendors, clinics, and brokers selling data. Then you got research, insurance, government public health sectors, analytics company’s, and others buying it. The price on a market level isn’t very consistent.
So patients trying to evaluate what their medical data’s value is, have a hard time doing so. Business preying on patients isn’t always the case. There’s a new generation of growing businesses and startups who aim to change how medical data is obtained or used. The Patient Savvy Co-op helps link research and development up with patients directly to buy their data or get their feedback, offering a patient centered approach for R&D. Betterpath is a blockchain platform giving patients a Health Savings Account that treats their data as an asset, generating the patient revenue from it. Citizen Health is a blockchain based platform giving patients a comprehensive view of their health from 30+ data sources in a user friendly mobile application. Hu-manity is an organization that’s trying to get data ownership as the 31st basic human right and create a full on movement. Virtumed360 is a telemedicine platform for physicians to practice care by themselves without a practice, ultimately making healthcare more personal which produces better data. Unity Health Score is a brokerage platform that not only allows patients to aggregate and sell their data, but offers an arsenal of analytics services to broaden their access to care.
George Mathew, Chief Medical Officer of DXC technology (formally Hewlett Packard) eloquently put’s it as — “Medical data shouldn’t be something built from manipulating and taking advantage of patients to create products most of them can’t afford.” This is the current state of the medical data market. It shouldn’t be this way, but it is. A recent Propublica article — Health Insurers Are Vacuuming Up Details About You by Marshall Allan, is a very well written piece demonstrating the most grotesque practices in big business healthcare today. Insurers are amassing personal data to raise peoples premiums through health-scores, which are analytics services meant to work against patients best interests instead of for them. The industry’s dirty underground operations are finally coming to light and along with it, new company’s who aim to take a different more ethical approach to handling medical data.
The price of medical data isn’t easily configured or answered, but as healthcare progresses and the general population is more informed on what’s all is going on. We will see a more transparent, ethical, and consistent approach handling medical data. One that not only provides a better answer to questioning the value of medical data, but changes the question from how much it’s worth to who legally owns it. Laws and regulations alone can’t change the market, HIPAA is easily circumnavigated to sell personal medical data by removing identifiable factors from medical records. This is going to take a massive campaign backed by innovative businesses and thought leaders to inform the general public on the price of medical data and who should own it. Own your data, own your health. This is healthcare without borders.