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
Sent: Thursday, June 13, 2019 12:44 PMSubject: RE: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676
“Washburn, Tricia (RIDOH)” <Tricia.Washburn@health.ri.gov>
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 systems” http://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
Sent: Thursday, June 13, 2019 3:24 PM
Subject: RE: [EXTERNAL] : Neil Hytanin presented false information regarding tracking bill H5541/S676
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
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]
Maddalena Cirignotta