Oregon S Legislative Experience Expanding the ALERT Immunization Information System (IIS)

Oregon’s Legislative Experience Expanding the ALERT Immunization Information System (IIS) to Lifespan

Overview:

In 2007, the Oregon Legislature passed a bill to expand the ALERT Immunization Information System (IIS) from ages 0 to 18 to a lifespan, or birth-to-death, system. This resource outlines the process of the legislation passage from idea to law.

Background:

In 1996, Oregon passed initial legislation to develop Oregon Immunization ALERT, the childhood immunization registry. Not all states have registry laws on the books, but laws can provide both structure and protection for the IIS. Oregon’s legislation allowed for the exchange of immunization information among authorized users for Oregon children age 0 to 18. The current Oregon IIS focuses on age 0 to 18, but includes a growing amount of adult data as well. Oregon’s childhood IIS is neither opt-in nor opt-out, as the legislation authorizes including all Oregon children for public health purposes. Oregon’s registry, however, is completely voluntary for providers. Currently, 91% of public and private providers submit data to the IIS. Oregon is a state of 3.7 million, and 76.7% of the population is 18 years and older. As of 2006, 28% of Oregonians 19 years and older had at least two shots included in the IIS. After over ten years of operation, Oregon began to explore the possibility of shifting from a childhood registry to a lifespan, or birth-to-death, registry, as part of a larger expansion to an Immunization Information System (IIS) with additional functionality. For the 2007 legislative session, the Department of Human Services Office of Family Health put forth legislation to expand the scope of the IIS to include adults.

Project Management:

In early 2006, Oregon began planning for the 2007 legislative session (Oregon’s legislature meets every other year). Significant project areas included:

• Providing logistics support

The process of writing the Legislative Concept, draft Oregon Revised Statute (ORS) language, and Oregon Administrative Rule (OAR) language, then moving them through the legislative channels, extended for nearly two years. It involved a collaborative investment with legislative counsel as well as with internal and external stakeholders.

• Creating partnerships and conducting outreach

Early in the process, the Oregon Immunization Program brought together a key group of partners and stakeholders to serve on the Lifespan Expansion Taskforce. The taskforce was made up of the following sectors/organizations:

§  School nurses

§  College health clinics

§  Oregon’s Quality Improvement Organization (QIO)

§  Local health departments

§  Private provider representatives

§  Pharmacies

§  Oregon’s legislative liaison

The taskforce began meeting monthly before ramping up to weekly meetings to prepare for and track the legislative process. This key collection of stakeholders went a long way toward representing the breadth of partners interested in the passage of this legislation.

This group then generated a broad and comprehensive list of all additional stakeholders and partners who should be contacted about the proposed legislation. The list included organizations and individuals who may need to know about the legislation for one or more reasons. The taskforce contacted each of the entities to:

1.  Invite them to testify.

2.  Encourage them to write a letter of support.

3.  Ask them to serve as a conduit for information to their constituency.

4.  Garner their verbal support.

5.  Address any potential resistance to the legislation.

• Developing products

The taskforce focused much of its work on developing a thorough information packet to educate partners and stakeholders about the legislation. The 18-page packet was made available by hardcopy and/or PDF to all interested parties, and contained the following elements:

§  Introductory letter from the Oregon Immunization Program Manager

§  A brief history and overview of the ALERT IIS

§  Lifespan IIS talking points

§  Lifespan IIS frequently asked questions

§  Benefits of a lifespan IIS for specific settings

§  Benefits of a lifespan IIS for individuals and stakeholders

§  Frequently asked questions for providing legislative testimony

§  Testimony format

§  Sample testimony text

§  Sample letter of support

§  ALERT Lifespan Taskforce member list

Feedback on the packet suggested it met our dual needs for sharing information about the upcoming legislation while also providing a roadmap for our partners and stakeholders who were interested in joining us in support of the legislation’s passage.

• Negotiating trade-offs

In regard to potential opposition, the taskforce only knew of one group who had actively opposed the legislation in the past; this was a religiously-affiliated group that believed strongly in the patient’s right to own and control access to his or her own data. Taskforce representatives met with a representative from this group to address the group’s concerns and strike a compromise, where possible.

The meeting, although yielding some tradeoffs, was successful. The main issue was in regard to opt-out. ALERT’s current IIS is neither an opt-in nor an opt-out – individuals are simply added to the IIS through primary (e.g., clinic) or secondary (e.g., health plan) source reporting. Parents of children 0 to 18 can choose to opt out of recalls or other IIS-based interventions, but they cannot remove their data entirely. Under the compromise we entered into, we agreed to provide an opt-out provision for adults in the IIS so that individuals could choose to purge their own data if desired.

• Coordinating representative testimony for legislative hearings

The bill was called for a hearing in the House Chamber early in January. In keeping with the legislative process, the taskforce had 72 hours to coordinate testimony and letters of support on the bill prior to the hearing. The group was able to get nine invested partners to travel to Salem to testify in support of the bill: four clinicians, two local health departments, two medical associations and one coalition representative. No one spoke in opposition to the bill. In May, the bill went before the Senate chamber, with similar results. The bill was signed into law in June, and went into effect in early 2008.

Results/lessons learned:

Key partners and stakeholders were invaluable in demonstrating the community support for the ALERT IIS in general and for the lifespan expansion specifically. In light of the very condensed timelines that the legislative process is under, advance networking and education of our stakeholder groups was essential, and allowed us to quickly access significant support during the hearings process. The Immunization Program was recognized by state public health partners for introducing a model process for the passage of future public health legislation.

A new law: the taskforce’s role in passing HB 2188A

February 2006

/ Proposed moving forward with legislation to expand the ALERT IIS from 0-18 to lifespan, with phase 1 to focus on expansion up to age 32 (future expansions contingent on funding). /
May 2006 / Developed and filed legislative concept (LC 540) to expand the ALERT IIS.
/ Began recruiting for the Lifespan Registry Taskforce. / June 2006
Taskforce held first meeting and began meeting monthly. / August 2006
Wrote first draft of legislation, forwarded it on to Legislative Counsel Committee; received, reviewed and edited subsequent drafts. / August-November 2006
October 2006 / Taskforce developed thorough partner/stakeholder list. /
November 2006 / Election! Both Chambers of the Oregon Legislature became Democratic.
November 2006 / Taskforce developed the Legislative Information Packet.
December 2006 / Oregon Immunization Program met with the only group providing known opposition to bill; developed compromise to purge adults upon request.
/ Taskforce contacted key stakeholders to educate them about the bill and ask for their support. / December 2006-January 2007
Hearing held in the House Chamber for House Bill 2188— bill passed with minor changes! / January 2007
Hearing held in Senate Chamber for HB 2188A—bill passed again! / May 2007
July 2007 / Began process to draft Oregon Administrative Rules (OARs); developed Standard Operating Procedures (SOPs) for Lifespan Expansion. /
March 2008 / OARS filed; changes implemented in ALERT IIS. The process is complete!

The Oregon Public Health Division works to ensure the lifelong health of all people in Oregon by promoting health and preventing the leading causes of death, disease and injury in Oregon. Learn more at www.public.health.oregon.gov.

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Key partners/stakeholders to support passage of legislation

Registry/IIS leadership

IIS committees/boards

Local immunization coalitions/leadership groups

Childhood/adult immunization coalitions

Immunization policy advisory teams

School law advisory boards

Governmental organizations

Local health departments

Medicaid/Medicare offices

Corrections/youth authorities

Preparedness coalitions

Key education partners

School nurses associations

Education associations

College health associations

Schools of nursing

Key community partners

Quality improvement organizations

Key healthcare partners

Medical associations/societies

Pharmacy boards

Health plans/health systems

Hospital associations

Long term care associations

Medical specialty/high risk organizations (asthma, diabetes, etc.)

The Oregon Public Health Division works to ensure the lifelong health of all people in Oregon by promoting health and preventing the leading causes of death, disease and injury in Oregon. Learn more at www.public.health.oregon.gov.