# Presentation: 180493

## Integrating Child Health Information Systemsin Oregon

- Sherry Spence, MA
- Oregon Department of Human Services
- Health Services, Office of Family Health

**Supported in part by funding from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, US Department of Health and Human Services**

## Local Acknowledgements

- Public Health Administrators and Professionals
- Donalda Dodson, RN, MPH, Office of Family Health Administrator, Oregon Title V Director
- FamilyNet Family & Child Module Core Team
- Al Ferro, MCH Research Analyst
- Annabelle Hiegel, Database Modeler
- Wendi Johnson, MPH, Program Coordinator
- Kendall Johnson, Project Support
- Jean Kennedy, Business Analyst
- Eve Pepos, Research Analyst
- Ravi Sathyanarayana, Lead Developer
- Joe Shapiro, IT Project Director

## National Acknowledgements

- Association of Maternal and Child Health Programs
- Association of State and Territorial Health Officials
- Centers for Disease Control and Prevention
- Council of State and Territorial Epidemiologists
- Health Resources and Services Administration
- National Association of County and City Health Officials
- National Association for Public Health Statistics and Information Systems
- Public Health Informatics Institute
- State Public Health Agencies and their data systems

## Enhancing healthcare communication

- <date/time>

- CLIENT
- MASTER

- WIC
- TWIST

- Immunization
- IRIS

- Women’s and
- Reproductive
- Health

- Day Care
- Nurse Consulting

- ALERT
- Immunization
- Registry

- Family and
- Child Module

- School Based Health Centers

**Enhancing healthcare communication**

**Notes:**
Plan first, then seek funding that fits your plans

Adjust plans to suit funding
	If adjustment is to sequence of components developed
	Not if the adjustment is to the goal of development

Demo:  Electronically Enhanced False Advertising
Presentation:  Demo without the really good smoke and mirrors

## Getting Started

- Define where we want to be
- Map how we’ll get there
- Identify the executive sponsor and steering committee
- Start from where we are
- Develop - and use - a strategic plan
- Seek funding based on the plan

**Notes:**
Define where we want to be:
Leadership, Governance, Strategic Plan
Most projects have goals and a timeline for tasks as their plan. Focused data systems can rely on that level of detail and do very well.  Integrated data systems can not.  The design and build process is necessarily long and costly and a weak infrastructure can not support or sustain the effort.  We need a clearly defined picture of what the full system will look like before we start, and we need someone who will carry that vision forward and defend it.  We also need a body who will take responsibility for developing a full, living strategic plan, will track progress against that plan, and make decisions or changes to the plan as needed, a true steering committee.
While it is possible to seek funding for the planning process, there must be at least a product description and executive summary of the need - the “where we want to be and where we are” before we seek funding or the funding will drive the plan and we will end up with a very effective data system for somebody else.

## Defining the Process

- Define What We Need, Not How We’ll Get It
- Family and child data in one system
- Local Users - Public and private providers
- Data available for local, statewide, and national use for surveillance, evaluation, and research
- Security & confidentiality maintained
- Within Program and Organization
- Among Programs and Organizations

**Notes:**
Define what we need
	Stakeholder Involvement
	Partnerships, Baby Steps, Continuous Review
Availability for service providers
Availability for linking to other databases
Child Development and Rehabilitation Center (CDRC)
Medicaid - Oregon Medical Assistance Programs
Push data capture to point of service - Useful to and therefore used by service providers; therefore useful to administrators, evaluators, policy analysts, and epidemiologists
Simple functionality, complex confidentiality
Family and child data available to public and private analysts, experts, and decision-makers
Pregnancy, child, and family data for analysis, decision support 
Aggregate data and metadata available to partners/analysts outside the agency
Starting point for research
Hearing loss, birth defects, genetics...
Parents more reachable for longitudinal and follow-up research 
To get good data, drive data capture to the point of service and make the data useful to those providing the service

## Where Oregon Wanted to Be(Unique Like Everybody Else)

- One system of care
- Early identification
- Coordinated action
- Health profiles
- Population surveillance and program outcome monitoring
- Program administration

**Notes:**
Case finding
            Location of those lost to my program’s followup
Coordinated care
 	Family-centric and family-operated
	Not family-administered or family-maintained
            Access and update available to partners outside DHS
	University-based Title V CSHCN program
	Independent local health departments
	Oregon Department of Education, Part B and C (EI/ECSE)
	Hospitals providing newborn screening
	Primary Care Providers
	The real data owners:  Families
Not so small side issues:
	Funding
	Complexity of the System
	Complexity of the Partnerships
	Planning  time and commitment
	Build time required

## Where Oregon Wanted to Be

- <date/time>

**Where Oregon Wanted to Be**
**(Unique Like Oregon)**

**Notes:**
Someone once said “Information is data in context.”
A successful information system works in its political and organizational context.
The necessary stuff that slows you down:
	Early Childhood System of Services
	Multi-agency Cooperation Mandated
	Many Public-Private Partnerships
is the stuff that stops you completely if you don’t pay attention to it
OR examples.
Another context is the reality of time and cost:
FamilyNet Data System already in development
	The WIC Information System Tracker - $9 MM
	Immunization Record Information System - $3 MM
	Planning for the Early Childhood Data System >$1MM

## Define How We’ll Get There

- <date/time>

- Infant
- Child

- Consolidated Data
-  of FamilyNet

- Child and
- Family

- Program or
- Population

- Pregnant or
- Post-Partum
-  Woman

- Maternal and Child Health

- Immunization

- WIC

- Authorized access by health care/public health/social service
- provider, program manager, analyst

**Solid Lines – information flow currently exists**
**Dotted Lines –  In development**

- Immunization
- Registry with
-  shot records
-  from private
-  and public
-  clinics

**IRIS**

**TWIST**

**FCM**

**Notes:**
Define How 
	Organizational and technical strategy
	Technical support and Coordination

Easy to use
Complete, accurate, and timely
Appropriately secure and confidential
Standardized data collection and use
Portable to other local, state, and national systems
Useful to families, providers, programs, managers, policymakers
Streamlined data capture and use
Replaces antiquated or categorical systems
Avoids duplicate data entry
Monitors services and outcomes over time
Access and support for users anywhere
Program administration data available in real time to answer real questions

Start where you are and describe, fully, where you want to be

## Enhancing healthcare communication

- Screening

- FamilyNet
- CLIENT MASTER
- Family and Child
- Module

- Birth Certificate

- Linked
- Newborn Data

- Hearing
- Screening

- Local Services
- to Children with
- Special Health Needs

- Population,
- Program,
- and Individual
- Reporting

**Enhancing healthcare communication**

- Probabilistic Matching

## Slide 11

## Develop Technical Strategy

- Review the successes of others
- Why did this succeed?
- Review current internal capacity
- Can we maintain this?
- Plan for the future
- Can we maintain this in five years?

**Notes:**
This slide is not in the wrong place.  While we all know that research begins with a literature search, good system integration begins with introspection.  We define our needs before we seek solutions.

## Lessons Learned

- Separate activities are linked activities
- Not simple, low-cost, or short-term
- Directness and persistence balanced with respect for organizational culture
- Maintain the balance of scope, time, and resources
- This is the means, not the end.

## Lessons Learned

- Building a statewide integrated data system is like using the crust to cross a bed of hot lava:  as long as you keep moving toward your goal and don’t step into anything too hot, you have to assume things are going OK.

## Lessons Learned

- The Information Revolution differs
- from the Industrial Revolution in that
- the value of information increases with use.
- 			-- David Ross
- Center for Innovation in Health Information Systems
- All Kids Count Connections Meeting, Fall 2002

## Contact Information

- sherry.spence@state.or.us
- FamilyNet’s Family and Child Module Prototype
- _http://170.104.158.25:81/_
- Website has feedback/e-mail capability