Ownership of medical data enables the Data Economy -

Wealth of nations is wealth of the people not governments

Now is the summer of our discontent. This discontent manifests as vitriol or actual violence in geopolitics and US domestic politics. Solutions to deeper problems in the US are barely subject to political discussion. The US is obviously going bankrupt with over 130% debt-to-GDP ratio and systemic government deficits approaching 10%. The major accelerants of indebtedness — insolvency of Medicare and Medicaid are still looming. It may be possible to refocus energies internally, including greater energy production, but these alone cannot overcome the mountain of past and future debt in the form of unsupported government IOUs for healthcare and retirement.

The wealth of nations traditionally comes from two sources: natural resources or a productive population. The US has the potential for both. We need to engage and empower the people for creative production of new value, known as emergence in mathematically precise definition. Emergence is appearance of the unexpected, and thus can only partly stimulated by the governments, which mostly need to remove barriers to innovation, such as the recent recognition that major cryptocurrencies BTC and ETH as commodities, not equity.

Where can enough value be generated? A recent study by Goldman Sachs and MIT researchers has observed regarding the “AI Bubble”: Not One Transformative Application Has Been Found. Chatbot technology is a long way from generalized artificial intelligence. Where will $1T+ applications come from?

Healthcare and the economy

Healthcare constitutes nearly one fifth of the US economy, outpacing investment in other developed nations nearly two-fold. This investment, which totaled $4.5T last year, could be a major source of recurrent revenue for the country. The main reason for this is lack of re-utilization of healthcare data. Conversely, a major source of emergent economic value is the ability to harvest prior investment in healthcare by leveraging existing and incoming medical data. In order to discuss re-use of medical data as a major pillar of a Data Economy, we need to understand the current gaps.

One of the major impediments for healthcare in the US is the dependence of doctors on bureaucracy and administration. This bureaucracy deepened with the adoption of the Affordable Care Act (ACA or “Obamacare”). Despite massive expenditures with hospital spending on Electronic Health Records (EHRs) approaching $10 billion and total spending approaching $20 billion in 2024, the ACA goals for “meaningful use” of EHRs by 2014 has resulted in a solution which prioritizes insurance over doctors and patients. Surveys of US patients confirm that they consider insurance having more weight in choosing therapy than their doctors.

Independence for patients and doctors requires independence of patient data, which can empower both by facilitating the patient-doctor relationship based on transparency and timely, comprehensive medical data.

Shortage of doctors

There is a dramatic shortage of doctors in the US. Wait times have increased dramatically, impacting primary care and emergency services, most of all. According to the CDC data in the worst performing ER departments over 10% of patients leave before being seen by a doctor. Part of the reason for the shortage of doctors has been misguided US policy between 1980 and 2006, when the legislators perceived too many doctors were being trained and successfully reduce the growth of medical schools and residency training. The greatest contributor to shortage of doctors is physician burnout. More than 3 out of every 4 doctors report burnout or outright depression! Many doctors are using the opportunity to retire.

There are many contributors to the physician burnout: the most important one is work overload and the main solution is reduction of work hours. Unfortunately, the doctors are getting the opposite. ACA or Obamacare has required “meaningful use” of Electronic Health Records (EHRs), but these platforms were designed for administration and billing, not with the doctors and patients in mind. In fact, EHRs are cited as the major reason for burnout by 75% of physicians.!

An assessment of How Physicians Spend Their Work Time from 2020 revealed that physicians spent 45% of their time on the EHR, including 23.6% multitasking with direct patient care. Paperwork, including EHR documentation, is the largest contributor to physician burnout according to Physician Burnout & Depression Report 2022 by Medscape. One doctor summarized the situation as: “I barely spend enough time with most patients, just running from one to the next; and then after work, I spend hours documenting, charting, dealing with reports. I feel like an overpaid clerk.”

Data ownership is the key

Finances have a great impact on healthcare choices. Currently, most patients consider insurance companies to have greater impact on treatment than do physicians. This relationship can be reversed. By providing patients and doctors with ownership of the medical data and the associated treatment implications, respectively.

Implications of medical data ownership for the patients were recently summarized in our post on the Impact of My Health, My Data Act across the US that is occurring at the State legislature level. The ultimate source of permission to re-use medical data lies with the patient. Timely and comprehensive medical data provided via Personal Health Record (PHR), a type of EHR, could be re-used and made very valuable for the patients, providers, and the economy overall. Provided anonymity and security are assured this is a democratic and sustainable source of emergent value that leverages existing sophisticated healthcare in the US.

Implications of medical data ownership for the physicians will also be great. First, they can also acquire an information-base source of passive income based on revenue sharing. Second, such centralized repositories will improve healthcare. Having access to individual’s records as well as the mathematical representation of similar health cases globally will empower the doctors. Finally, the B2C-focused PHR can complement B2B-focused EHRs by focusing on Continuity of Care Documentation (CCD) and delivering superior AI, such as exists today, to automate transcription of doctor’s notes and improve the presentation of information for the physicians (UI/UX). Current EHRs require hours of uncompensated data entry. A recent assessment of How Physicians Spend Their Work Time from 2020 revealed that physicians spent 45% of their time on EHRs, including 23.6% multitasking with direct patient care.

Implications for investors and the economy are also profound. Global spending on healthcare is approximately 10% of total GDP and exceeds $10T/yr, with the US accounting for as much as 45%. Some countries, like Australia already have national healthcare registries My health record that are a type of PHR, but without the data ownership and re-use we described. The ability to re-use healthcare investments could offer a dramatic source of revenue for any country that figures out how to co-operate with business and to share value with patients. Also, healthcare data provides the best opportunity to provide a killer app for the current massive AI infrastructure investments.