Dept of Health statements do NOT match bill language. Bad Database Bill fight forges forward

Dept of Health statements do NOT match bill language. Bad Database Bill fight forges forward
Read the email exchange below where DOH states comments not actually explicit defined in the bill. Neil also admits that the KidsNet database tracks many forms of information that you are not told is getting entered into a central database. Very concerning situation that everyone should be fighting against such databases. Unless a long term goal is to eventually go door to door, there is zero reason that informed consent shouldnt be the avenue in which to be included in such a database.
This bill will be heard in senate HHS committee Tues June 18th and on the house floor June 19 th to vote – contact as many legislators as possible to oppose. Email whole general assembly.
Sent: Thursday, June 13, 2019 7:45 AM
To: Washburn, Tricia (RIDOH) <Tricia.Washburn@health.ri.gov>; Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>Subject: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676

Good morning Tricia,
Yesterday afternoon (6/12/19), Neil Hytanin gave lawmakers false information regarding medical tracking bills H5541/S676. He told HEW committee members that the information of Rhode Islanders who opt out, would be removed from the data base. That is false. RIDOH does not currently expunge information nor is there any provision in the bill to compel them to. I’m writing to formally request documentation from RIDOH of his assertion that our medical information will be expunged if we opt-out of the medical registry.
Warmly,
Maddalena Cirignotta
——
From: Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>
Sent: Thursday, June 13, 2019 12:44 PMSubject: RE: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676

Good afternoon ,
Thank you for your inquiry. The Rhode Island Department of Health (RIDOH) have stated in multiple hearings that it is possible to remove all of an individual’s information from the Rhode Island Childhood and Adult Immunization Registry (RICAIR) should he or she choose to opt out. RIDOH plans to make that an option. We have heard your concerns regarding the accessibility of the form to avail oneself of the opt-out provision. In response to the concern you raised and in maintaining consistency with the current practice of contacting RIDOH, there is language included in the Sub A of the proposed legislation that will mandate an opt-out request form is available and submittable on RIDOH’s website.
It is important to emphasize, however, that should RIDOH remove all of an individual’s identifiable information from RICAIR at any given point in time, RIDOH has no way of preventing future information from being entered into the database. Should more information be entered after the initial removal of all identifiable information, the individual must make subsequent opt-out requests to RIDOH.
There is another option that individuals may want to consider. If there is basic information (name, date of birth, address, phone) for an individual, RIDOH can include a notation that this individual has requested no vaccination data be entered under his or her name.
So that individuals will have the chance to decide which option is best, RIDOH intends to allow the individual to designate on the form which option they choose.
RIDOH reiterates that the information included in the current immunization registry and what will be included in RICAIR is only a subset of the information that is included in KIDSNET. This seems to be a point of confusion. Immunization data is one portion of what is included in KIDSNET. In its totality, KIDSNET is a comprehensive data system RIDOH uses to manage multiple state and federal programs such as newborn screening, WIC, family home visiting, and lead prevention—all of which serve Rhode Islanders and keep them healthy.
RIDOH’s goal is not to just collect data to populate a lifetime registry. RIDOH’s goal is to build an effective registry that allows RIDOH staff to study vaccination rates in the community and guide Departmental strategies to achieve the high levels of immunization coverage necessary to keep Rhode Islanders protected from disease outbreaks. A lifetime registry will also allow RIDOH to better respond to disease outbreaks when they happen. 48 other states are already have authorization to establish lifetime registries (47 of which are already operational). Recently, the states of Washington and New York have experienced large outbreaks of preventable diseases, and public health officials have used the information contained in the lifetime registries to keep their citizens safe, save lives, and prevent unnecessary spending of healthcare dollars. States who have opt- in registries are not able to monitor vaccination rates and respond to outbreaks as effectively and efficiently as states with opt-out registries.
At a time when preventable diseases are making a resurgence around the country it is RIDOH’s duty and responsibility to do all it can to protect and preserve the public’s health.
Best,
Neil Hytinen
————–
To:”Hytinen, Neil (RIDOH)” <Neil.Hytinen@health.ri.gov>,
“Washburn, Tricia (RIDOH)” <Tricia.Washburn@health.ri.gov>
Hi Neil,

As a spokesperson for the Department of Health, it is imperative that you make truthful, fact based statements to lawmakers. Legislatures rely on RIDOH for accurate information.

Yesterday (6/12/19) during the consideration of H5541/S676, you told committee members that RIDOH will remove the information of those who opt out of the medical registry. As I stated in my original email, RIDOH does not currently expunge information nor is there any provision in the bill to compel them to. I’m writing to formally request documentation from RIDOH of your assertion that our medical information will be expunged if we opt-out of the medical registry. What part of the bill requires RIDOH to remove our information?

In response to your assertion that “the information included in the current immunization registry and what will be included in RICAIR is only a subset of the information that is included in KIDSNET,” The bill language removes age limitations for the medical database but does not limit RIDOH to tracking only immunization data. What part of the bill limits data collection to vaccinations?

Provisions requiring the reporting of immunization status and any other relevant information that the director determines appropriate for all persons under the age of eighteen years for the purpose of establishing and maintaining a childhood an immunization registry,; provided, however, that the information collected by the department for the immunization registry will only include data elements nationally endorsed by the Centers for Disease Control and Prevention as necessary to meet standards for immunization information systemshttp://webserver.rilin.state.ri.us/BillText/BillText19/SenateText19/S0676.pdf http://webserver.rilin.state.ri.us/BillText/BillText19/HouseText19/H5541.pdf

The list of data elements is 9 pages long and expressly pre-approves other data elements that individual may collect, again affording RIDOH enormous discretion with what they may collect. https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-stds.html

If RIDOH only wishes to collect vaccination data, why does the department refuse to amend the language to vaccination only?

On a final note, you have stated that, “Recently, the states of Washington and New York have experienced large outbreaks of preventable diseases, and public health officials have used the information contained in the lifetime registries to keep their citizens safe, save lives, and prevent unnecessary spending of healthcare dollars.” Please keep in mind that the medical registry for adults in New York is OPT-IN ONLY WITH WRITTEN CONSENT and yet you have just indicated that the registry was effective.

Sincerely,

Maddalena Cirignotta

——-
From: Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>
Sent: Thursday, June 13, 2019 3:24 PM
Subject: RE: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676
Hi,
Yes as mentioned before we will have an option made available to remove information from RICAIR. Please accept this as documentation and the previous email as documentation even if the legislation is silent on the subject there will be that option. We are also fine with including language in statute. We would be happy to include the following language.
“Any person may opt out of the choose to remove their information from immunization registry by contacting the department directly by phone or by submitting a form online which shall be made available on the department’s website.”
As for limitations to what is collected the language in the bill reads as follows:
“information collected by the department for the immunization registry will only include data elements nationally endorsed by the Centers for Disease Control and Prevention to meet standards for immunization information systems.” Which can be found here: https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-stds.html
Again RICAIR will be built as a separate database from KIDSNET and immunization data will be removed from both databases if requested.
Also attached are the ACIP recommended vaccines for both adults and children which are limitations that are set in current statute.
Finally, as mentioned before is the most effective way to ensure effective immunization coverage recommended by the CDC and WHO. It is an effective way to balance protecting our community while preserving individual rights.
Best,
Neil Hytinen
——–
Sent: Thursday, June 13, 2019 5:50PM
To: Hytinen, Neil (RIDOH) <Neil.Hytinen@health.ri.gov>; Washburn, Tricia (RIDOH) <Tricia.Washburn@health.ri.gov>
Subject: Re: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676
Hi Neil,
Are you saying that the ONLY documentation you have that RIDOH will remove our information are your emails to me? Keep in mind that you sent them AFTER your statements to HEW and you have acknowledged that “the legislation is silent on the subject.”
Additionally, you mentioned that, “should RIDOH remove all of an individual’s identifiable information from RICAIR at any given point in time, RIDOH has no way of preventing future information from being entered into the database. Should more information be entered after the initial removal of all identifiable information, the individual must make subsequent opt-out requests to RIDOH.”
You are proposing a system which would require that we opt-out repeatedly yet we would receive no written confirmation that we have opted out in the first place. That is unreasonably burdensome to the public and contradicts your promises to lawmakers that the opt-out process would be simple.
Opt-in is the only way to protect the rights of individuals against data mining. I reiterate that the list of CDC approved data elements is 9 pages long and expressly pre-approves other data elements that individual may collect, again affording RIDOH enormous discretion with what they may collect. https://www.cdc.gov/vaccines/programs/iis/core-data-elements/iis-func-stds.html [cdc.gov]

Again, I ask If RIDOH only wishes to collect vaccination data, why does the department refuse to amend the language to vaccination only?
Sincerely,
Maddalena Cirignotta

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