1. Collecting Information on Behavioral and Social Factors in the EHR Robert M. Kaplan Associate Director, NIH Office of the Director Director Office of Behavioral and Social Sciences Research Committee for Social & Behavioral Domains for Electronic Health Records September 24, 2013

2. “Science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life and reduce illness and disability.”... NIH: Steward of Medical and Behavioral Research for the Nation

3. U.S. Health in International Perspective: Shorter Lives, Poorer Health U.S. Health in International Perspective: Shorter Lives, Poorer Health Sponsor Briefing National Institutes of Health January 8, 2013 Steven H. Woolf, MD, MPH Chair, Panel on Understanding Cross-National Health Differences Among High-Income Countries Sponsor: National Institutes of Health National Academies Press © 2013

4. 17 Peer Comparison Countries Australia Austria Canada Denmark Finland France Germany Italy Japan Norway Portugal Spain Sweden Switzerland The Netherlands United Kingdom United States

5. Years of Life Lost Before Age 50, 2006-2008 Males Females US male and female newborns can expect to lose about 1.4 years and 0.8 years of life, respectively, before age 50. The US losses before age 50 are double those of Sweden, the best performing country.

6. Probability of Survival to Age 50 in 21 High-Income Countries, 1980-2006 Males Females For decades, American youth have been less likely to survive to age 50 than people in other rich nations.

7. Change In Female Mortality Rates From 1992–96 To 2002–06 In US Counties. ©2013 by Project HOPE - The People-to-People Health Foundation, Inc. Kindig D A, and Cheng E R Health Aff 2013;32:451-458

8. Bottom Up: McGinnis and Foege JAMA 1993, 270, 2207. Tallies of available information about the presence or absence of a factor in association with a given outcome (eg, whether or not a driver in a motor vehicle fatality had a blood alcohol concentration above acertain level). Population-attributable risk calculations were used to arrive at estimates based on determinations of the relative risk for a particular health outcome of a population exposed to a specified health risk

9. Date of download: 9/23/2013 Copyright © 2012 American Medical Association. All rights reserved. From: The State of US Health, 1990-2010: Burden of Diseases, Injuries, and Risk Factors JAMA. 2013;310(6):591-608. doi:10.1001/jama.2013.13805 Number of Deaths and Percentage of Disability-Adjusted Life-Years Related to the 17 Leading Risk Factors in the United States in 2010 for Both Sexes Combined Figure Legend : Fineberg critique – Poor representation of socioeconomic factors – Sum of the effects of risk factors exceeds 100% – Method works through diagnosis rather than total mortality JAMA August 14, 2013 Volume 310, Number 6

10. Top Down  Derived from large data bases using linear models Actuarial Studies Large Epidemiologic Cohorts  Example, logistic regression analysis of all cause mortality in the Framingham Heart Study

11. PERCENT OF CANCER PATIENTS ADMITTED TO ICU DURING THE LAST MONTH OF LIFE, 2010

13. Total Reimbursements (Part A + Part B)

14. What Are the Underlying Causes of Death in the United States? From Schroeder, N Engl J Med 2007; 357:1221-1228 A variety of different analyses consider the factors underlying the most common cause of death. Across studies, the high estimate for the benefits of health care is 20%, with most studies estimating around 10%. Determinants of Heath Outcome

15. Deaths Attributable to Behavioral Factors: Adapted from Murray 2013 ATTRIBUTABLE TO BEHAVIORAL FACTORS NOT ATTRIBUTABLE TO BEHAVIORAL FACTORS

16. Need for Research Studies ♦ Most studies use their own measures, often unknown characteristics and quite different measures for same construct ♦ Without standard or more harmonized measures, difficult to do reviews, syntheses, compare across studies

17.  In the billions of dollars spent on EHRs in last several years, one thing is missing: Patient-Reported Measures  Advent of patient-centered medical home and “meaningful use” of EHRs  Impossible to provide patient-centered care if no patient measures, goals, preferences, concerns collected  With recent advances in measurement, meaningful use incentives, time is right Need for Primary Care

18. Domains and Items for Patient Health Update

19. Why Use IOM? In order to achieve harmonization, we must come to consensus on –Which domains should be measured Must develop criteria for identifying domains –Examine both data elements and mechanisms for data collection using evidence from the research as well as input from key stakeholders EHR vendors; government, health and technology agencies; the private health care industry