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Citizen's Council on Health Care reports urgent alert!

Sorry, this is a long one, but extremely important email I received. Head's up everybody. Citizen's Council on Health Care (CCHC) is a local watch dog at the Dept of Health and State Capitol.

We Minnesota Paulites were at the State Capitol a year ago this time eagerly handing out reports on Legislation attempting to be passed that gave health care providers the right to take blood samples from new borns without getting consent from the parents.

This is called DNA warehousing and they have been doing this since the 90's all over the States and the world.

Turned out the bill did not pass because we all gave voice against it and Governor Pawlenty vetoed it. But that does not mean the Dept of Health won't attempt to do what they want anyway!

February 6, 2009

Minnesota Department of Health
Attn: Will Wilson
Division of Health Policy
65 East Seventh Place, Suite 220
St. Paul, MN 55164-0882

RE: MDH Plan to Collect, Use, and Transfer Private Medical Data

Dear Mr. Wilson,

On behalf of Citizens' Council on Health Care, I am providing you with the following comments on the Minnesota Department of Health's plan to collect, analyze, and use the private medical data of Minnesotans, and the plan to send patient data to a Maine Health Information Center (MHIC) data warehouse.

1) No Legislative or Public Hearings. We find it reprehensible the manner in which the Minnesota Department of Health (MDH) secured authority to collect, store, analyze, use and disseminate the private medical data of all Minnesotans without their knowledge or consent. The "encounter data" proposal which became law as a result of end-of-session 2008 health care reform negotiations never received a legislative hearing. The controversial proposal was added to the health care reform bill behind closed doors. This is particularly disturbing because the proposal runs contrary to the clear will of the public. In 2002, when the Department first tried to implement this proposal through rulemaking, there was a public outcry. Approximately 1,000 letters were sent to the Department from angry members of the public. A public hearing was held before an administrative law judge, and a major legislative hearing was held 2 months later. As a result, the Department was forced to withdraw the rule in March 2003.

2) Thwarting the Public's Will. Endangering the Public's Health. The public further rejected the Department's 2004 attempt to gather private medical data on patients and doctors for the purpose of tracking doctors, directing the purpose of medicine, and intruding on the patient-doctor relationship. After the public again expressed outrage through petitions, the 2004 legislation was terminated. It was given a June 2006 sunset date and never allowed to get off the ground. Yet this year's MDH plan, according to comments made at the January 29, 2009 "public meeting," is focused on tracking physician treatment decisions, and using the data to build score cards ("provider peer groups") that will publicly and potentially financially penalize any doctor who does not comply with the government's definition of one-size-fits-all treatment directives. This "pay for performance" authority will interfere in the patient doctor relationship, pressuring doctors to comply and enabling government-based health care rationing.

3) Public Dismissed. To completely avoid any public input on this plan, and in an attempt to quickly make this government surveillance and tracking plan a reality, the Department secured expedited rulemaking authority in the 2008 law. No public input options were included. As a result, the public is not even allowed to request a public hearing.

4) No Meaningful Public Notice. On January 29, 2009, the Department held a "public meeting," but failed to even announce the meeting to the public. No notice was released to the media. Our organization only learned about it the day before it took place. The meeting was attended primarily by government officials, health plan executives, and clinic/hospital staff. In truth, this was not a public meeting, and should not qualify as anything remotely meant to engage and inform the public. A one-hour conference call was also held, but there was no media announcement either. One hopes that MDH will not argue that having information on their website was any kind of real public announcement, as it cannot be argued that the public knows about the website, visits it regularly, or had any reason to think that they should be monitoring the MDH website for any such meeting.

5) Public Input Not Welcome. We note that the MDH/MHIC technical services contract focuses on getting input from "stakeholders, particularly by health plans and third party administrators who will begin submitting health care claims data on July 1, 2009." It seems clear that recommendations from the public were not high on the list, and thus not sought out by the Department.

6) Government Data Practices Authority in Question. We find it very troubling that MDH is requiring health care providers to send private patient data to an organization in the State of Maine. While the MDH contract with the Maine Health Information Center states that "the Contractor must comply with the Minnesota Government Data Practices Act (M.S. Chapter 13)," it is not clear that failure to do so would be enforceable. What protection is there for Minnesota residents if MHIC uses the data for their own purposes, or the Maine legislature enacts laws that require sharing of Minnesota patient data?

7) In Harm's Way. MDH is planning to access and analyze the medical data of Minnesotans over the Internet. This arrangement places private patient data online and in harm's way, making it accessible to hackers and others.

8) Trackable. Re-identifiable. We disagree that the patient data is "de-identified" in such a way that the data could not be re-identified. The fact that the department decided to use the first and loosest form of deidentification in HIPAA (the Department claims the second option was "overly conservative"), and to also include the medical home identifier for each patient, makes it clear that the department is interested in retaining as much data as possible. Such data could easily be used to re-identify the individual (ie. discharge date and hour, facility and physician identifiers, diagnoses, medications, pharmacy, medications, gender etc.) now or in the future. The collected patient data is not anonymized, leaving individuals unprotected from re-identification. And as the Department said at the January 29th meeting, they fully intend to track patients across providers and health plans.

9) Failure to Count the Cost. When asked at the January 29th meeting to detail the financial costs of this government surveillance and research initiative, Department officials leading the "public meeting," could provide no monetary figures to the audience. They could not remember the cost of their contract with MHIC. They did not know their own costs related to the administration of the program. And they had no idea what the costs would be for those required to report the data. In fact, MDH publicly admitted that they never attempted to even figure out the cost to reporters of data (insurers and others)—and consequently to patients and insurance enrollees. Nor did they have to, because there were no legislative hearings for the public to ask questions.

In conclusion, the Minnesota public is about to be victimized by determined and deceptive officials at the Minnesota Department of Health. By legislative and statutory maneuvering, end of session back room deals, and deliberate lack of transparency, the Minnesota Department of Health has effectively quashed all public input and dissent. The public will have no say about who will access, own, analyze, control and use their most personal of data—the MDH/MHIC contract gives MDH "ownership" of all "encounter data" and the "encounter database." Minnesotans will not only lose their medical privacy, they will become involuntary subjects of Department research, analysis, and intrusive (perhaps coercive) "pay-for-performance" experimentation.

This is a travesty for the more than 5 million patients and citizens who call Minnesota home, and call privacy and informed consent a constitutional, patient and individual right.

Unless the Minnesota Administrative Law Judge chooses otherwise, the public will be at the mercy of the Department's warehousing, data-mining, tracking, research and health care rationing agendas. Their private data will be warehoused in the State of Maine and placed online. They won't have had a choice—or a voice.

Sincerely,

Twila Brase, R.N., PHN
President
Citizens' Council on Health Care
1954 University Ave. W., Ste. 8
St. Paul, MN 55104
651-646-8935 office
651-646-0100 fax

P.S. We notice that the public comment schedule according to the MHIC presentation on January 29th gives a February 10th deadline. MDH did not publicly correct that date during or after the MHIC presentation. Please advise immediately on whether the public has until Tuesday, February 10th to provide comments.



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