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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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Citizens' Council on Health Care
1954 University Avenue West, Suite 8, St. Paul, MN 55104
Phone: 651.646.8935 / Fax: 651.646.0100, e-mail
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