Protect Confidentiality of Children's Medical Vaccination Records

The Threat to Confidentiality

What Can I Do To Help?

Who Can I Contact To File Complaints?

• Sample Letter To Texas Department Of Health
• Sample Letter To Your State Representative And Senator
• Sample Letter To Senator On Protecting Privacy And Confidentiality

The Threat to Confidentiality

February 25, 1998

Dear Fellow Texans,

A very important legal issue regarding the confidentiality of our children's medical vaccination records has surfaced. By becoming aware of the issues and writing to the Texas Department of Health and your state legislators, we can preserve the confidentiality our children's medical records currently have and limit the scope in which our private information will be collected and distributed in the future.

Currently doctors and insurance companies follow legal guidelines which define children's medical records, including all vaccination records, as confidential. Last session (spring '97), legislation was passed authorizing a statewide immunization registry to monitor and track all childhood immunizations. The initial version of House Bill 3054 gave no option for a parent to not have their child in the registry.

Due to the efforts of concerned parents, an amendment to the legislation was passed to preserve confidentiality of parents and children who did not want their private information entered in a statewide registry or even given to the Texas Department of Health (TDH). The amendment required parental consent for inclusion and allowed parents to withdraw from the registry at any time. TDH was then given time to develop rules governing the collection, maintenance and distribution of records.

The proposed rules have just been posted in the Texas Register as a matter of public record. We are currently in a thirty (30) day period of public comment before they are adopted. While at first glance they appear to guarantee confidentiality, closer examination reveals that TDH is trying to grant themselves sweeping authority to obtain and disseminate private information about us and our children. There are no effective safeguards protecting parents who do not want this information given to TDH in their proposal. Additionally, the rules do not clearly state what information may be collected in the future or restrict to whom it can be distributed.

The good news is that we are in the public comment period to voice our opposition. EVERY letter written to TDH has to be personally responded to when the TDH writes their final rules. If a current concern in the rules is not objected to in this comment period, it will not be changed by TDH or considered for challenge by our legislators.

What Can You Do To Help?

We need you to voice your opposition NOW. This is our only chance. All letters need to be received no later than March 20th in order to be considered a part of public record.

We are asking that you write four (4) letters. The first and most important letter will go to the TDH Immunization Director, Robert Crider, commenting on the proposed rules. The second and third will go to your Texas State Senator and your Texas State Representative informing them about your concerns. The fourth will go to Senator Jerry Patterson (the author of the confidentiality amendment) letting him know that you are concerned and angry that TDH is attempting to circumvent the intent of his amendment. For your letters to the legislators, include a copy of your letter to TDH which outlines your specific concerns. Please write your letters in your own words and vary the sequence of concerns. Feel free to add or delete from the supplied example letter as individual letters have much more impact than standard form letters. The letters can be sent through electronic mail or regular mail.

If you do not know your state senator and representative, link to the Texas Find Your Incumbent System web site http://www.capitol.state.tx.us/fyi/fyi.htm and enter your zip code and street. If you do not have Internet access, this information can be obtained from your local librarian.

If you would like to review the full text of the Texas Department of Health proposed Rules, you may do so at http://www.sos.state.tx.us/texreg/archive/February201998/PROPOSED/health-services.html#65 and scroll down to Chapter 100.

If you would like to review the final version of the law defining the immunization tracking system (House Bill 3054) you may do so at http://www.capitol.state.tx.us/tlo/billnbr.htm.

If you have time, review these so you can write about any additional concerns you may come up with.
Please write NOW and forward this notice to anyone that you know who is concerned enough about their privacy to take action. Your state senator and representative take constituent letters seriously. Your notice will also make them aware of TDH's apparent intentions to circumvent the amendment passed to limit their authority. Your small investment of time WILL make a very much needed impact. Thank you.

Sincerely,
Dawn Richardson

[email protected]
Parents Requesting Open Vaccine Education

Who Can I Contact To File Complaints?

See sample letters below.

Your Name
Your Address
Your Phone
Your Email

Date

Robert D. Crider, Jr., M.S., M.P.A.,
Director, Immunization Division
1100 West 49^th Street
Austin, TX 78756
Phone: (512) 458-7284
Fax: (512) 458-7288

[email protected]

Subject: Comments on the proposed rules for House Bill 3054 pertaining to the Statewide Immunization Registry as published in the Texas Register.

As a parent who is concerned about the confidentiality of my child's medical records, I would like to make my concerns about the proposed rules for the Immunization Tracking System a part of public record during this comment period.

I OBJECT TO THE BURDEN OF ACTION BEING PLACED ON THE PARENTS TO DECLINE CONSENT.
Parents not wishing to have their child included in the registry should not have to do anything. The law only requires consent to release the data, not a written statement to prohibit it.

Section 161.008 pertaining to the immunization record states that "the department, only with the consent of a child's parent, managing conservator, or guardian may: 1) obtain the data constituting an immunization record for the child from a public health district, a local health department, or a physician to the child."

Requiring parents to write and mail a separate form to TDH

1. is redundant. Doctors already have consent forms. Anyone who hasn't already signed a consent form obviously has not given consent
2. allows TDH to maintain a separate database on parents not wishing to be included in the registry - apart from the registry - to be used for whatever purposes that are unregulated since it is not a part of the registry
3. is deviant from the spirit of the intent of Jerry Patterson's amendment to HB 3054 maintaining full confidentiality for parents not wanting to be included in the registry or any other TDH files regarding the immunization status of their child.

I OBJECT TO A DOCTOR, HEALTH CARE PROVIDER, OR INSURANCE COMPANY RELEASING ANY INFORMATION TO TDH FOR A CHILD WHOSE PARENT HAS NOT GIVEN CONSENT.
The way the rules are written, it allows for the doctor or insurance company to forward all immunization data en masse, including the records of children whose parents don't want their records going to TDH. TDH states that these records will not be included "in the registry", but they still have them to put anywhere else, including, but not limited to, a file of parents declining consent. In the rules in section 100.3, TDH tries to give insurance companies the right to "assume consent" to release data to TDH even if no consent is given. As a parent concerned about the confidentiality of my child's medical records, I don't want TDH to have my child's records at all if I have not given consent. This intent of the law is to protect confidentiality and honor consent. The rules circumvent that intent.

Section 161.007 section c) states that "An insurance company, health maintenance organization, or other organization is not required to provide an immunization history to the department under this subsection for a person for whom consent has not been obtained in accordance with the guidelines adopted under Subsection (a) or for whom consent has been withdrawn."

And

Section 161.007 section d) states that "A health care provider is not required to provide an immunization history to the department under this subsection for a person for whom consent has not been obtained in accordance with the guidelines adopted under Subsection (a) or for whom consent has been withdrawn."

I OBJECT TO TDH MAINTAINING ANY FILES ON A CHILD PERTAINING TO THEIR IMMUNIZATION HISTORY OR CONSENT FOR A PARENT WHO HAS WITHDRAWN CONSENT.
Since consent is no longer granted, then section 161.008 should also apply here. TDH no longer has consent, so according to the law, they no longer have the authority to obtain the data. Therefore, all data previously obtained needs to be deleted not just from the registry, but all other files.

Section 161.008 pertaining to the immunization record states that "the department, only with the consent of a child's parent, managing conservator, or guardian may: 1) obtain the data constituting an immunization record for the child from a public health district, a local health department, or a physician to the child."

In addition, in the rules it states that "The Bureau of Vital Statistics will provide the option for parental consent for inclusion in the registry on the birth certificate. The consent will be valid for life unless the parent notifies the department that consent has been withdrawn." I request that on the birth certificate and anywhere else consent for inclusion is given, that full disclosure of withdrawal procedures are included for parents who change their mind

I OBJECT TO THE HIGHLY PERSONAL DATA OF MY CHILD'S SOCIAL SECURITY NUMBER, THE FAMILY'S PERSONAL HOME ADDRESS, THE MOTHER'S MAIDEN NAME, AND THE CHILD'S SEX BEING INCLUDED IN THE REGISTRY.

Section 161.008 b) defines an immunization record in the registry to contain:

1. the name and date of birth of the person immunized;
2. dates of immunization;
3. types of immunization administered;
4. the name and address of the health care provider administering the immunization.

Here again, the Texas Department of Health is trying to sidestep the legislation and obtain more information than they are allowed as defined in the law. Given that this information will be transmitted electronically, even though there are penalties for misuse of this information, it does not prevent the potential harm to the family for this information getting in the wrong hands.

I OBJECT TO THE "TRANSMISSION OF RECORDS TO OTHER STATE AND NATIONAL REGISTRIES."

Section 161.008 (c) (2) pertaining to the immunization record states that "the department, only with the consent of a child's parent, managing conservator, or guardian may: 2) release the data constituting an immunization record for the child to a public health district, a local health department, a physician to the child, or a school or child care facility in which the child is enrolled."

The law does not provide for release of this information to other state or national registries, or anywhere else under any circumstances. Since TDH has no jurisdiction over the confidentiality procedures for other state and national registries, they should not be allowed to make this data available.

I OBJECT TO THE ABSENCE OF RECORDING MEDICAL AND RELIGIOUS EXEMPTION DATA IN THE REGISTRY.
TDH has given itself, doctors, and insurance providers the authority to provide notices "by mail, telephone, personal contact, or other means" of "overdue" immunizations to parents. This subjects parents with legal medical and religious exemptions to vaccinations to unnecessary harassment. In addition, without a place to record exemptions, when a health care provider other than the primary is treating a child and sees that an immunization is overdue according to the recommended schedule, this places the child with a medical contraindication (e.g. allergy to an ingredient in the vaccine or past neurological damage triggered by a vaccine, etc.) at high risk for being vaccinated with potentially devastating medical consequences.

I OBJECT TO THE TEXAS DEPARTMENT OF HEALTH DEFINING ALL PROVIDERS AS AGENTS FOR THE TEXAS DEPARTMENT OF HEALTH FOR THE PURPOSES OF THE IMMUNIZATION REGISTRY.
Again, according to the statute quoted above, providers are not required to provide any of this information without consent. By defining providers as agents, that could potentially release them from their obligation to maintain doctor/patient confidentiality. TDH is using this definition to attempt to obtain non-consented data in a manner inconsistent with the law.

I OBJECT TO THE QUALITY ASSURANCE SECTION OF THE RULES (100.6) ALLOWING TDH THE ABILITY TO INSPECT THE CHILD'S MEDICAL RECORDS.
This section of the rules tries to rationalize quality assurance, but there is no way to protect and maintain confidentiality of other sensitive private medical record entries if TDH has access to the child's medical file.

I look forward to seeing these concerns addressed. I have also forwarded my comments to my Texas State Senator, my Texas State Representative, and Senator Jerry Patterson.

Sincerely,
Your Name

Your Name
Your Address
Your Phone
Your Email

Date

The Honorable (Your Texas State Senator or Representative looked up at http://www.capitol.state.tx.us/fyi/fyi.htm)
Address
Phone
Email

 Dear Senator ___________ or Representative ___________,

As a concerned citizen living in your district, I am writing to you in regard to the proposed rules for House Bill 3054 pertaining to the Statewide Immunization Registry as published in the Texas Register.

I urge you to voice your opposition to these proposed rules during the public comment period ending on March 20^th because the provisions in the rules to guarantee our legal rights to confidentiality of our children's medical record are weak and inadequate. TDH's actions are unacceptable. I am attaching a copy of the letter that I sent to TDH to record my specific objections.

Privacy issues are of utmost importance to me and my family. Finding a state agency trying to collect and distribute personal information without following the clear consent provisions of the law is a serious matter that I hope you will investigate and do all you can to prevent.

I would appreciate hearing from you on this issue and what you intend to do about it. For your convenience, I have included the following information. If you wish to review these rules for yourself, they can be found under the title Chapter 100.Immunization Registry at:
http://www.sos.state.tx.us/texreg/archive/February201998/PROPOSED/health-services.html#65.

Your comments will be included as public record if made by March 20^th to:
Robert D. Crider, Jr., M.S., M.P.A.,
Director, Immunization Division
1100 West 49^th Street
Austin, TX 78756
(512) 458-7284
[email protected]

Thank you for your attention to this important issue.

Sincerely,
Your Name

Your Name
Your Address
Your Phone
Your Email

Date

The Honorable Senator Jerry Patterson
P.O. Box 12068
Capitol Station
Austin, TX 78711
[email protected]

Dear Senator Patterson,

As a parent who appreciated your work to maintain our rights to confidentiality of our children's medical records, I have some very serious concerns about the Texas Department of Health's proposed rules for the immunization tracking system. I feel that the Texas Department of Health has written their proposed rules for implementing this registry in a way that superficially appears to protect our confidentiality rights, but actually gives themselves sweeping authority to obtain and disseminate private information about our children. I urge you to please voice opposition to these rules.

TDH's actions are unacceptable. I am attaching a copy of the letter that I sent to TDH to record my specific objections.

Privacy issues are of utmost importance to me and my family. Finding a state agency trying to collect and distribute personal information without following the clear consent provisions of the law is a serious matter that I hope you will investigate and do all you can to prevent.

The public comment period closes the 20^th of March. Thank you for your attention to this issue.

Sincerely,
Your Name

April 5, 2008