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Personalized Health Care:

Opportunities, Pathways, Resources

genomics ? health information technology ? evidence/clinical delivery

September 2007

PERSONALIZED HEALTH CARE:

OPPORTUNITIES, PATHWAYS, RESOURCES

September 2007

United States Department of Health and Human Services

CONTENTS

Foreword by HHS Secretary Michael Leavitt...............................................................................................1

Opportunities: Envisioning a New Kind of Health Care .............................................................................3

Challenges: Prerequisites to Achieving Personalized Health Care ..........................................................7

Pathways: Building Blocks of Personalized Health Care...........................................................................9

Resources: HHS Programs Supporting Personalized Health Care .........................................................15

I. Expansion of the Science Base

Human Genomics Research............................................................................................................15

Genome-Wide Association Studies .................................................................................................16

Genes, Environment and Health Initiative .......................................................................................18

Human Genome Epidemiology Network..........................................................................................19

National Health and Nutrition Examination Survey..........................................................................20

Biomarkers Consortium ...................................................................................................................21

NIH Biomarkers Projects .................................................................................................................21

Cancer Research Programs Supporting Personalized Health Care ................................................23

National Cancer Institute ..........................................................................................................23

Office of Biorepositories and Biospecimen Research...............................................................24

National Program of Cancer Registries ....................................................................................25

Heart, Lung, and Blood Research Programs Supporting PHC ........................................................26

Eye Research Programs Supporting PHC.......................................................................................27

II. Health Information Technology American Health Information Community ........................................................................................28

Office of the National Coordinator for Health Information Technology ............................................29

Health Information Technology Initiative..........................................................................................30

Health Information Technology for Safety Net Providers.................................................................30

Use of Medicare Data To Support Research on Health Outcomes .................................................31

Personalized Health Care: Opportunities, Pathways, Resources i



III. Intervention Development and Review

Critical Path Initiative To Improve Medical Product Development ...................................................32

Regulatory Submission of Genomic Data in Medical Product Development ...................................33

Review of Genetic Tests for Use in Clinical Practice .......................................................................34

Pharmacogenetics Research Network ............................................................................................37

IV. Integration Into Clinical Practice

Health Data Standards and Genetic Information Resources ...........................................................38

Evaluation of Genomic Applications in Practice and Prevention .....................................................41

Roadmap for Medical Research: Clinical and Translational Science Award Program.....................42

Cancer Biomedical Informatics Grid (caBIGTM) ...............................................................................43

Promoting Quality in Genetic Testing ..............................................................................................44

CLIA Oversight of Genetic Testing ..................................................................................................45

Promoting Effective Communication Between Laboratories and Clinical Settings ..........................46

Genetic Testing Reference Materials Coordination Program ..........................................................47

Evidence-Based Practice.................................................................................................................48

Effective Health Care Program.................................................................................................48

Centers for Education and Research on Therapeutics.............................................................47

Accelerating Change and Transformation in Organizations and Networks......................................50

Practice-Based Research Networks ................................................................................................51

Health Resources and Services Administration Resources To Support PHC .................................52

Genetic Services Program........................................................................................................52

Genetic and Newborn Service Screening Regional Collaboratives ..........................................52

National Hemophilia Program...................................................................................................53

Sickle Cell Service Demonstration ...........................................................................................54

National Cord Blood Inventory..................................................................................................54

C.W. Bill Young Cell Transplantation Program.........................................................................55

Newborn Screening Quality Assurance Program ............................................................................56

Genetic Testing and Newborn Screening Disease Information Portal.............................................56

Family History..................................................................................................................................57

U.S. Surgeon General's Family History Initiative......................................................................57

Family History Public Health Initiative .....................................................................................58

Personalized Health Care: Opportunities, Pathways, Resources ii



V. Privacy and Other Issues........................................................................................................................59

Protecting the Privacy of Patient Health Information .......................................................................59

Secretary's Advisory Committee on Genetics, Health, and Society ................................................60

National Committee on Vital and Health Statistics ..........................................................................61

Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children......61

Overview of Federal Health Care Delivery Programs ...............................................................................62

Glossary of Terms .......................................................................................................................................65

HHS Agencies and Web Sites.....................................................................................................................66

HHS-Supported Web Sites of Interest........................................................................................................67

Personalized Health Care: Opportunities, Pathways, Resources iii



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