A Model Bill for State Public Health Database Collection, Management, and Analytics
This bill provides a deep state independent, open source database that tracks both pharmaceuticals and human disease from inception to end of life, and beyond, creating a true picture, ...
through an associated comprehensive analytics suite, or any analyst’s own analytics, with the freedom to report, without government interference or manipulation, the true efficacy and adverse events history of pharmaceuticals. This “freedom of medical informatics” act will return integrity to the pharmaceutical and healthcare industry by construction.
I have, in dozens of previous substack articles, worked through the rationale for such a model bill. It has been worded so that it fits within the existing healthcare law of South Carolina: Title 44: Health. Any state (or country) can restructure the wording to fit within its own legal structure. In that sense, it is a “framework” for how future health data should be managed for both medical, AND POLITICAL purposes, and at any level of institutional or political governance.
The model bill is attached as a pdf file. It is formated as a SC bill, but, as mentioned, can be reformated to fit the implementation of any legal structure.
You will note that there are a dozens of committees the current law creates that are related to healthcare management and that, you would say, require access to the database. However, there is more to it than that. In fact, the committees are not necessary or only citizens, not special interests, need to be on the committees. Queries and algorithms can be created to implement the charges of those committees and whether it is a special interest, a politician, or a community group, a query will be available to implement the charge(s) of the committee and that query can be run at any time; ie, a committee doesn’t have to meet and labor through collecting and analyzing the data. This arrangement changes the entire decision-making attitude of both the political and the medical communities. And it removes special interests and the deep state from the process. I’m not going to say that money will be saved through the proposed implementation, though it seems likely. I can say that citizens will be healthier and better served, and lives will be saved.
To complete this presentation, I will include here the Principles and the Objectives of the Bill. Your comments and criticisms are welcome.
Act Name
(A) This Act shall be known as “{Political Organization} Health Information and Analysis System (SCHIAS) providing transparency, accountability, and risk management in public health decision-making Act”
(Author’s note: Since this bill was written for South Carolina Law, the SC stands for South Carolina)
Principles
(B) Principles: These are necessary principles regarding healthcare data, analytics, risk analysis and decision-making support tools:
(1) Independence. The SCHIAS shall ensure that potential biases and conflicts of interest are minimized, balanced, or otherwise managed in the design and implementation of all processes, practices, and policies related to the Act
(2) Integration. In order to establish the cause of symptoms and adverse effects, healthcare data shall include:
(a) the analysis of the pharmaceutical product of special focus for purity and functionality
(b) the evaluation of the quality of the manufacturing process of pharmaceutical companies of special focus
(c) full access to patients’ health history, including all pharmaceuticals given to the patient, along with the dates, lot information, and place of administration, all informed consent records
(d) mortician, medical examiner, and autopsy results for designated infectious diseases
(3) Special Focus Support: Specific analyses are required for different public health facilities and functions
(4) Functionality. A full suite of analytic tools, from those commonly used to experimental, must be integrated into the system. Furthermore, interactive dashboards shall be a major feature. These dashboards will include at least these 3 categories:
(Author’s note: the dashboard implementations, both in terms of standards, and examples, can be searched on the internet through the search term “health dashboard”. These are “standard’. The more analytic oriented dashboards have examples such as listed in the white paper submitted to the Senate and attached as an addendum to this proposed bill: “Internet Resources Useful for Evaluating Covid-19 Pharmaceutical Outcomes,” by me.
(i) Clinical
(ii) Quality
(iii) Analytics Tools
(5) Transparency. All processes, practices, and policies related to the healthcare data are developed in the spirit of openness, shall be clearly articulated, and shall be available to interested persons or entities; any deviations from them must be documented and justified.
(6) Fairness. All processes, practices, and policies related to the databases are designed and implemented in a fair manner.
(Author’s note: I don’t know what this means right now.)
(7) The Patient-Health Care Provider Relationship: The medical care, along with all the data collected during that process, is a private relationship between the patient and the patient’s health care provider. The patient owns those data, no one else. The patient may permit other individuals or organizations to have a copy of those data through a signed document (a HIPPA document). The state nor any other organization may not access secretly those data, even through a technology-created back door. The state is a customer of SCHIAS and may access the data as a customer. With respect to all the databases described in this act, the patient must give permission for the SCHIAS to access the patient’s data.
(8) Private Personal Information and Healthcare Organization Confidentiality Protection. The design and implementation of the healthcare database shall protect the confidentiality of personally identifiable information (PII) while enabling traceback to patients when adverse effects are detected that should be addressed by other patients that have the same medical situation. Healthcare Organization financial and quality information will not, in a public analysis, be traceable back to the institution unless permitted by law. It will remain confidential to the Committee unless the Committee releases it.
(9) Timeliness. Frequent data update, and on-demand update of data analysis should be available in order to capture early signals of adverse effects as well as new disease outbreaks.
Objectives
(C)Objectives: The General Assembly finds that the objectives of this system are to:
(1) Re-establish integrity and trust in public health in South Carolina.
(2) Remove the dependency on the federal government and transparently provide data and analysis support for pharmaceutical effectiveness and adverse effects which will support public health in South Carolina.
(3) Establish an executive body and a healthcare database that will be free of influence from any government agency or any healthcare organization.
(4) Establish a culture in the medical community that questions whether health problems are associated with pharmaceuticals as either unintended consequences or adverse effects which threatens public health. Provide funding to study and identify these threats.
(5) Have access to reliable and timely health data to protect the citizens from Constitutional overreach by the federal and state governments, especially the manipulation, incompetence, and poor policy recommendations regarding health and education by their executive branchest. Additional state initiatives are necessary to ensure that citizens of all ages can critically assess information in general, but especially information related to their own and their family’s health.
(6) protect SC citizens from Corporate and Institutional overreach, manipulation, incompetence, and poor policy recommendations regarding health.
(7) protect the informed consent ethic and basic human rights
