Why a decentralized health records approach is the way out of today’s byzantine healthcare system
If you wonder why the US healthcare system is so unhealthy, stop blaming it solely on the cost of medicines. Today, prescription drugs account for just 14% of total health spending.1 And brand-name prescription drugs account for just 7%.2 So where does the money go?
Middlemen are sucking the system dry in more ways than one
It’s long been recognized that distorted incentives within the pharmaceutical supply chain, including rebates and discounts, add unnecessary costs. But even more insidious is the sale of your medical data without your knowledge or consent. The $100 billion/year data brokerage industry does not serve direct patient care, but merely props up the fragmented US health care delivery system that wastes well over $1 trillion per year.
Why you should care about data brokers
IMS, a well-established data broker, automatically receives more than petabytes (10^15 bytes) of data from the computerized records held by pharmacies, insurance companies and other medical organizations—including federal and many state health departments. Three quarters of all retail pharmacies in the U.S. send some portion of their electronic records to IMS. All told, the company says it has assembled half a billion dossiers on individual patients from the U.S. to Australia.3 Pfizer alone spends $12 million annually to buy health data from a variety of sources.3 Data brokers make a substantial profit off of your information, none of which goes to you.
The data is supposedly scrubbed of personally identifiable information, but removing a name, social security number, and detailed address is simply insufficient to preserve anonymity. Consider: when a pharma company knows the diagnosis, zip code, age, and specialty and zip code of the physician seen, they can target a very narrow population of individuals and physicians. And these “anonymous” data sets can be easily cracked. As an MIT graduate student, Harvard University professor Latanya Sweeney identified then Massachusetts governor William Weld in publicly available hospital records by comparing the supposedly anonymous hospital data about state employees to voter registration rolls for the city of Cambridge, where the governor lived. Soon she was able to zero in on certain records based on age and gender that could have only belonged to Weld, detailing a recent hospital visit that included his diagnosis and prescriptions.3
How data brokerage can impact the quality of medical information
Third-party data supplied by data brokers is often incomplete and error-ridden. Inadequate, siloed information leads to suboptimal decisions, which can compromise care, affect
clinical trials, violate patient privacy, and increase costs. Inaccurate and/or incomplete medical information contributes to misdiagnoses, inappropriate therapy, and treatment delays that can lead to further injury or even death.
In a national survey of 12,000 adults in 2016 by Black Book Market Research, 89% of patients reported withholding medical information due to distrust of health information technology.4 In 2019 US government survey, 66% had concerns about privacy when health information is electronically exchanged.5
A decentralized, patient-controlled health record can eliminate the middlemen to preserve privacy and help control costs
A well-designed patient-controlled medical record puts patients and clinicians in control. Patients can connect with their doctors or hospital directly, with no intermediary. Patients can decide who can access their records, and when, and can remove access as they see fit. They can get second opinions, knowing that their records are accurate and complete. Caregivers can be secure in the knowledge that they are prepared for a medical emergency. And they can do it all on their smartphones.
While a decentralized patient-controlled health offers clear benefits, data brokers will not disappear overnight. As long as they are active, there are important questions that need to be addressed by patients, providers, and policymakers, including:
Should there even be a market for health data, or is it preferable to treat it as a social responsibility to share?
Should patients be able to monetize their health records by contracting directly with a buyer, such as IMS or a pharmaceutical company?
Is there a legitimate role for data brokers, such as removing duplicates or providing AI-based suggestions?
Should data broker activities remain “hidden” from public scrutiny?
Physicians are hard to engage. Will direct patient control over health records make it easier or harder to reach them with relevant information?
These questions may not have easy answers. Hopefully, removing or minimizing the role of data brokers will lead to a realignment of values that will prioritize the patient-provider relationship over third-party profits that inflate the cost of healthcare across the board.
Our team of physicians and engineers at HIE of One is currently working prototyping Trustee®, a patient-controlled health record designed to fulfill these requirements. With Trustee®, the decision to share information, whether for medical care or research, resides with the patient, not a data broker, EHR, or other third party. If patients choose to sell their data directly to and end user, such as a medical researcher, they can specify the acceptable payment and privacy guardrails. And with Trustee®, the end user will know the information is accurate and complete.
For more information about Trustee®, contact Adrian Gropper, MD info@trustee.ai.
The Altarum Institute. “A Ten Year Projection of the Prescription Drug Share of National Health Expenditures Including Non-Retail,” October 2014, addendum update May 2017.
Berkeley Research Group, “The Pharmaceutical Supply Chain: Gross Drug Expenditures Realized by Stakeholders,” January 2017.