Global Integration of Personal Health Data
Comes to Missouri
“Privacy means people know what they’re signing up for, in plain language, and repeatedly. I believe people are smart. Some people want to share more than other people do. Ask them.”
— Steve Jobs
On June 7, 2021 Missouri joined the other 49 states in passing the Prescription Drug Monitoring Program. SB 63 was one of Missouri Governor Mike Parson’s first priorities that year.
As the governor said in this 2021 press release,
“Establishing a statewide prescription drug monitoring program has been a top priority for my administration, and I want to thank Senator Holly Rehder and Representative Travis Smith for working to get this landmark legislation across the finish line,” Governor Parson said. “SB 63 will help provide necessary information to health care professionals and empower them to make decisions that better serve their patients and assist in fighting the opioid epidemic in Missouri.”
And an epidemic it might be, but an even bigger problem has been the heavy-handed solution — both the signing away of our data privacy with PDMP and disciplinary actions, fines, and jail sentences for doctors who dare to prescribe pain medications for the chronically ill. It brings new meaning to never letting a crisis go to waste. Even those who do not prescribe pharmaceuticals are facing threats for suggesting that supplements can be beneficial, as Dr. Eric Nepute found out earlier this when he was slapped with 500 million dollars in fines for prescribing Vitamin D during the early weeks of the Covid outbreak.
The Data Collection Epidemic
Though there might be a crisis of drug use in Missouri, it’s debatable whether giving up our privacy to the PDMP drug monitoring systems will prove to be worth the sacrifice.
In many ways, it seems that we have traded the promise of security for our freedom in inviting the PDMP system into our state and the “integration of health” that comes with it. It wasn’t long after PDMP passed that the Missouri Dept. of Health and Senior Services announced their replacement for Dr. Randall Williams, Dr. Donald Kauerauf, to lead Missouri as the department chair. With a long history in programs designed to monitor individuals including children for the sake of public health, the grassroots strongly opposed the nomination, after which Governor Parson withdrew his appointment.
SB 7 to the Rescue
However, the state bureaucracies’ push toward data control and consolidation of health data continues, thanks to a new bill that would put the management of the state’s data, including private health data, in the hands of a new state official. Sen. Caleb Rowden’s SB 7 would create a new position, a Chief Data Officer appointed by the Commissioner of Administration.
Duties of the Chief Data Officer:
- Oversee each state agency’s management of electronic data
- Classify its data into levels of sensitivity
- Develop, adopt and update written policy for breaches of electronic data
- Develop, adopt and update policy for disposal of electronic data
- Adopt standards and procedures
- State agencies shall communicate and cooperate with CDO
Consolidation of data may seem like a good idea, considering the data breaches that have happened with state’s online databases as recently as 2021, after PDMP was adopted. As the St. Louis Post Dispatch reported in October of that year, hackers accessed the private, financial data of teachers, counselors, and administrators across Missouri. Based on state pay records, over 100,000 social security numbers were vulnerable.
As with every crisis, however, the quick solution usually means less freedom and more control — in this case, expanding the bureaucracy in Missouri to manage all of the data in one place and it isn’t clear who would have that job at any given moment. If the Chief Data Officer is unavailable, the Commissioner of Administration will be responsible — or anyone he designates. At best, this would be an unelected bureaucrat. While centralization might make sense for a private business, it is not what we expect from government, especially with public-private partnerships becoming more and more of a problem.
Integrated Health Networks
This month, the Missouri Department of Health and Senior Services announced their new position that sounds very much like what SB 7 proposes — a Chief Medical Officer. If the new CMO Dr. Heidi B. Miller’s plans are implemented, our state will soon have an integrated system where an infinite number of providers, hospital, and stakeholders from within our state and beyond will have access to your data. In a press release earlier this month, the department announced that Dr. Miller would “continue to build and implement the vision of an integrated public health and health care system“. “I have devoted my career to improving population health and caring for patients in Missouri,” said Miller.
Missouri is well on the way to this goal. That state already has agreements with the health software company Netsmart, which collaborated recently with the global data and healthcare IT solution company Bamboo Health to manage its mental health support crisis network, Missouri Behavioral Health Connect. Missouri’s mental health data will be part of a nationwide network. As Bamboo Health says of this integrated network,
“By working together to connect healthcare providers, emergency departments and crisis response professionals across a national network, OpenBeds and Netsmart will deliver an advanced system to help states, counties and providers respond to 988 and crisis line demands. Streamlining mobile crisis service coordination, treatment facility bed availability, electronic transfers and referrals to behavioral health services, the solution will create a full-picture view of an individual’s journey, including health history and treatment and services, making it easier for providers to get patients engaged with the right level of care they need quickly.”— Bamboo Health, April 2022
What could possibly go wrong?
Once this vision of an integrated public healthcare system is in place, your data will be everywhere, vulnerable to attack far beyond Missouri and perhaps the U.S. Worse yet, the information the state is sharing with companies like Bamboo Health could be used against you if you, for instance, disagree with a doctor’s diagnosis or plan of care. If you are flagged in a national system as being uncooperative, all providers you visit — all hospitals you go to for care — will see it. What used to be a private relationship between a doctor and a patient is fast becoming readily available to an alarming number of people.
SB 7 is the next piece of the puzzle needed in the consolidation of data in order to optimize public health in Missouri, perhaps with PDMP as the data bank. This bill has been referred to Emerging Issues, although no hearing has been scheduled. We will be watching this bill and sending action alerts should it begin moving in the Senate.
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