NCHPEG Annual MeetingSeptember 23, 2009

NCHPEG, March of Dimes, Harvard Partners, Genetic Alliance

Health Resources and Services Administration

Family History for Prenatal Providers

Outline

Background

Overview of project

Project developments

Demonstration of related family history tool

Discussion

Family History

Risk assessment based on family history:o Personalizes and prioritizes health

messageso Shifts the focus of health care from

treatment to preventiono But only if providers obtain, interpret,

and act on the information

Family History in Prenatal Care

Challenges:1. Time for collection2. EHR almost useless for FH3. Inadequate provider knowledge4. Complex and lengthy clinical

guidelines

Project Overview

Three-year cooperative agreement with HRSA (6/09 – 5/12)NCHPEG March of DimesHarvard Partners/Newton Wellesley Hospital/Mass

General HospitalGenetic Alliance

Produce a family history tool for PCPs delivering prenatal careInteractivePoint-of-careClinical decision supportImmediate educational resources

The Prenatal Family History Tool

Tablet PC

Tool database

Electronic Risk Assessment

Educational Materials

Electronic Health Record

Work Plan1. Family history literature review for prenatal,

newborn, and lifespan of female patient – August 2009

2. First advisory-committee meeting – Oct. 2, 2009

3. Select and confirm clinical sites – December 2009

4. Adapt HughesRiskAppsTM for use in the prenatal setting – July 2010 Risk algorithms, functionality, user interface

5. Develop patient and provider educational materials– July 2010

6. Evaluate the impact on the knowledge and behavior of prenatal providers – July 2010 – December 2011

7. Implement and evaluate pilot Tablet-PC, web-based, and hard-copy versions of tool in clinical sites – March 2011

8. Disseminate the tool through professional societies, national meetings, and health resource websites – December 2011 – May 2012

9. Develop a detailed set of recommendations for the integration of family history information into EHRs – 2012

Work Plan

Clinical Site Selection

1. In-house “champion”1. Any volunteers?

2. Existing IT infrastructure3. In-kind resources4. Collaboration on evaluation 5. Access to genetic services6. Diversity

1. Geographic 2. Provider 3. Patient

Determining Scope of ToolPrenatal vs. perinatal/pediatric vs. lifespan of

patientNumber of conditions vs. algorithm

complexity/time for data entry Will include both monogenic and complex

disordersFragile XPre-term birthNewborn screening

Can we incorporate risk assessment and education for other conditions?Hereditary cancer syndromesOsteoporosis

Demonstration

Questions?

PartnersNCHPEG

Joseph McInerneyEmily Edelman

March of DimesSiobhan DolanBruce Lin

HRSAPenny KylerMichele Puryear

Harvard Partners/NWH/MGHKevin HughesBrian DrohanAdam Woflberg John Sharko

Genetic AllianceJames O’LearyVaughn Edelson