Wednesday, May 16, 2018

Hurried, tacky, and sloppy way to revoke health privacy protections at Legislature

Voiding Minnesota's strong health data privacy protections with an amendment by Representative Zerwas to SF 3019 on the House floor tomorrow (Thursday May 17th) is foolish and senseless.

Of all the votes in the Minnesota Legislature on privacy this session, this is the ONE the public needs and legislators need to pay attention too.  The amendment slays Minnesotan's robust right to consent where your most sensitive health data shall go.  The proposal is poorly designed and done in a hustled way by business and health industry interests.

The attempt by the author is to do away with one of the best health data privacy protection/rights in the country and replace it with parts of the HIPAA regulations.  Important to understand the premise, that HIPAA, a federal regulation sets a minimum floor of privacy protections and rights, but allows states to be more protective of your information or provides you with more rights.

When I pressed Representative Zerwas, who is the author of the original bill, and corporate and health industry lobbyists I did not get a coherent and detailed rationale.  What one hears for this  change: will save money and give coordinated care. (questionable)  Also said  the proposal will not damage your health data privacy, because you have the federal government minimum standards to rely on.

But proponents of the amendment are wrong in their surety that adopting HIPAA standards and ditching our state protections will fill the gap of privacy protections. 

Our current law assures you have control where your most sensitive data goes to and for what purpose.  For example, you do not want your mental health data to be seen or sent to the foot doctor, you have that choice and right.  Minnesota law allows you to CONTROL where your health data goes.

Slapping down Minnesota's consent provision jeopardizes your privacy to where your health data can be widely disseminated and be used for purposes without your knowledge and consent.

Who decides where, for what purpose, and to whom your personal health data is used and dispersed, you or the business and health interests?

If the proponents want to ditch Minnesota's consent and privacy protections show how HIPAA  has same robust protection with consent and privacy protection.

Instead, what is proposed on the floor of the House is deletion of about 13 words of our current law and replace it with some twenty words referring to a federal regulation.  The regulation is pages long and I am sure many of the House members have not read and understand.

The regulation with its broad language and definitions encompasses many activities that many people are not familiar with and allows for health data to be strewed about which individuals may want to control and not so easily be strewn about.

There has been no hearing on the Senate side on the original bill or amendment.  In the House only one hearing in a health committee.  The bill has not been heard in the Civil Law and Data Practices Committee.

To be clear, can there be changes to Minnesota law to accommodate concerns and issues, yes, but not in this manner.  Trading this amendment for the loss of our states protections is a bad exchange.  If this proposal along with others can be discussed in a rationale and comprehensive way, it would be better for us.

The place for this rationale and comprehensive discussion is the Legislative Commission on Data Practices and Data Privacy.  With suggestions to be made for January 2019 when the Legislature comes back.  Many questions and issues can be discussed in a way that all parties will get their say.

The commission can explore many questions and issues such as:

How can state law deal with the wishes of an individual patient to not have certain sensitive data be shared with others?

Can coordination of care and individuals right to control where their data goes co-exist within state law?  (Note:  Over the years when issues arose they have been addressed within our state law on health data)

How can penalties and rights for patients be more enhanced on a state level where there are violations of privacy rather than rely on a federal agency?

These are just some examples of points of questions that need  and can be explored.

Minnesota has had a comprehensive health data privacy law which has been recognized nationally.  Why would we want to lower our standards?  Do not think the HIPAA regulations give you a comfortable feeling of reassurance that sensitive health data is a matter between you and your doctor, you'll be duped.  The federal regulations set standards for privacy where health, business, and public interests often prevail over the patients desire for confidentiality.

Do not abrogate Minnesota's privacy/consent provisions in this hasty and sloppy way.

Saturday, March 3, 2018

Will you lose privacy protection and rights with your most sensitive data?

The right of consent, which is a cornerstone of our Minnesota Health Records Act, which gives you the ability to manage your most sensitive health data, to keep it private, where it goes, and what it can be used for is about to be taken away.  By whom?
Out of view from the public, the Minnesota Chamber of Commerce, Minnesota Business Partnership, Minnesota Council of Health Plans, Minnesota Medical Association, Minnesota Hospital Association and some legislators are working hard to do just that. To be substituted by what is known as HIPAA, the federal law.
There has been an enormous push of cunning by special interests at the Capitol to lead some policymakers into an unseeing acceptance by business and health lobbyists assertions that HIPAA will increase their constituent's privacy protections and rights.
Telling to you straight, what the proposed legislation SF 2975 and House companion does is opposite, it guts your right of consent to release of your health records and replaces it with Code of Federal Regulations, title 45, part 164, subpart E. 
SF 2975 by Senator Pratt:

Section 1. 

Minnesota Statutes 2016, section 144.293, subdivision 2, is amended to read:

Subd. 2.


Patient consent to release of records.

A provider, or a person who receives a health records from a provider, may not release a patient's health records to a person without:

(1) a signed and dated consent from the patient or the patient's legally authorized representative authorizing the release;

(2) specific authorization in law, which includes Code of Federal Regulations, title 45, part 164, subpart E, for those entities and individuals subject to Code of Federal Regulations, title 45, part 164, subpart E; or

(3) a representation from a provider that holds a signed and dated consent from the patient authorizing the release.

My understanding is that Representative Zerwas will be the House author.
This new language, underlined, (CFR, title 45, part 164, subpart E) gives right of access to your health data to many more players that are known as covered entities and business associates without your consent and specific knowledge.  The proposal allows for more wider dissemination and access of your health data to institutions and government.
You may ask yourself, why does Mr. Neumeister care.  I have been around a long time, since late 70's, through the 2010's at the Minnesota Legislature. Have dealt with special interests at the Legislature, helped policymakers build our strong privacy protection and rights and defend those rights and protections, and will call out organizations such as those I mention in the 2nd paragraph of this post who try to do things that are not right to Minnesotans and done with slight of hand.
I still remember one of the biggest fights of my non-paid career at the Legislature.  I fought over two years to where we as Minnesotans could get access to our medical records and get copies of them. (1986-1987 sessions)  The Minnesota health industry with such notables as the Minnesota Hospital Association and Minnesota Medical Association opposed that simple right.  The same mindset it appears they have today.
Are there fixes that can be made in this area of law?  Yes, but not done in a "Damn the torpedoes, full speed ahead" mentality that pillage the protections and rights we now have in our state law.
HIPAA sets a floor of standards of how health records are to be handled, but allows states to be more protective of your information or provides you with greater rights.  This is what Minnesota law does
Do not expect HIPAA to give you comfortable feeling of reassurance that sensitive medical data is a matter between you and your doctor, you will be deluded.  The federal regulations as proposed in this bill and others that I have seen set standards for privacy and rights where health industry, business, and government interests often prevail over the patients desire for confidentiality.  And this should NOT be.
Contact your legislator!

Tuesday, February 27, 2018

Off to Woodbury to talk transparency and accountability

On March 22, 2018, Saint Paul-based non-profit Public Record Media (PRM) will host a free Freedom of Information (FOI) workshop at the R.H. Stafford Library in Woodbury, Minnesota. The event will will run from 6:30pm-8:00pm.  The R.H. Stafford Library is located at 8595 Central Park Place in Woodbury, Minnesota 55125.
Seating is limited.  RSVP by calling Public Record Media at 651-556-1381, and leaving a message with your name and contact information.
The workshop will explore how members of the public can use Minnesota's Data Practices Act to obtain government records.  Each year - in conjunction with long-time data advocate Rich Neumeister - PRM hosts FOI workshops across the state, with the aim of training people about how to use the state's data access laws for research, education, and fostering government accountability. 
PRM is hosting its March event in Woodbury in light of the city's recent appeal to the Minnesota Legislature to make changes to the Data Practices Act - including eliminating the laws' long-standing provision that allows the public to inspect data at no cost.  Under current law, public requesters have the option to review data at government agencies for free, as opposed to paying for copies of data.
The event is free to the public. Participants are encouraged to bring ideas for their own public record requests.  
Public Record Media is a Minnesota-based non-profit organization that conducts public record-centered publication, legal work, and education.