Technology and Caregiving: Research Priorities Carolyn Clancy, MD Director October 3, 2003

Overview About AHRQ: The Evidence Agency About AHRQ: The Evidence Agency Health-information technology: essential to improving health and health care Health-information technology: essential to improving health and health care Research opportunities Research opportunities

AHRQ Customers and Goals Outcomes Quality Cost, Use and Access Clinical Decision- makers Health System Decision-makers Public Policy Decision-makers

AHRQ RESEARCH FOCUS: HOW IT DIFFERS Patient-centered, not disease-specific Patient-centered, not disease-specific Dual Focus -- Services + Delivery Systems (including home) Dual Focus -- Services + Delivery Systems (including home) Effectiveness research focuses on actual daily practice, not ideal situations (“efficacy”) Effectiveness research focuses on actual daily practice, not ideal situations (“efficacy”) AHRQ mission includes production and use of evidence-based information AHRQ mission includes production and use of evidence-based information

Overview About AHRQ: The Evidence Agency About AHRQ: The Evidence Agency Health-information technology: essential to improving health and health care Health-information technology: essential to improving health and health care Research opportunities Research opportunities

New York Times, December 18, 2002

RAND Study: Quality of Health Care Often Not Optimal Patients’ care often deficient, study says. Proper treatment given half the time. On average, doctors provide appropriate health care only half the time, a landmark study of adults in 12 U.S. metropolitan areas suggests. Medical Care Often Not Optimal Failure to Treat Patients Fully Spans Range of What Is Expected of Physicians and Nurses Study: U.S. Doctors are not following the guidelines for ordinary illnesses. The American healthcare system, often touted as a cutting-edge leader in the world, suddenly finds itself mired in serious questions about the ability of its hospitals and doctors to deliver quality care to millions. Medical errors corrode quality of healthcare system

RAND Study: Quality of Health Care Often Not Optimal Doctors provide appropriate health care only about half the time Doctors provide appropriate health care only about half the time Percentage of time Alcohol dependence Hip fracture Peptic ulcer Diabetes Low back pain Prenatal care Breast cancer Cataracts 11% 23% 33% 45% 69% 73% 76% 79% E. McGlynn, S. Asch, J. Adams, et al., The Quality of Health Care Delivered to Adults in the United States, N Engl J Med, 2003

Potential of IT for Assessing Quality IT can enhance the precision and decrease the cost of measurement – i.e., getting to the “right” measures IT can enhance the precision and decrease the cost of measurement – i.e., getting to the “right” measures IT can also enhance translation of strategies to improve quality (e.g., decision support) IT can also enhance translation of strategies to improve quality (e.g., decision support) IT can greatly enhance the timeliness of data collection IT can greatly enhance the timeliness of data collection

“Potential is what you have when you haven’t done it yet” Darrel Royall University of Texas Football coach

Percent of Americans Saying “I Have A Chronic Condition” Percent of Americans Saying “I Have A Chronic Condition” Chronic Illness and Caregiving Survey, Harris 2000 Chronic Illness and Caregiving Survey, Harris 2000

Patient-Centered Care Information technology can support: Information technology can support: – Communication – Clinical knowledge – Online support groups – Decreased hospitalizations and shorter lengths of stay – Improve health care outcomes – Improved quality of life Gustafson et al. Am J Prev Med. 1999

Research in Progress - 1 Clinical decision support to reduce medication errors and adverse events in nursing homes Clinical decision support to reduce medication errors and adverse events in nursing homes Use of HIT to identify patients at high risk of adverse outcomes in long term care settings Use of HIT to identify patients at high risk of adverse outcomes in long term care settings Use of HIT to improve pain management for patients at home Use of HIT to improve pain management for patients at home Impact of shared medical records on quality, safety and patient-MD communication Impact of shared medical records on quality, safety and patient-MD communication

Research in Progress - 2 Computerized tool to help individuals choose which Medicare plan is best for them Computerized tool to help individuals choose which Medicare plan is best for them CHESS: on-line information and support to improve patient outcomes (HIV; other conditions) CHESS: on-line information and support to improve patient outcomes (HIV; other conditions) Decision support: should I be screened for prostate cancer? Decision support: should I be screened for prostate cancer?

Overview About AHRQ: The Evidence Agency About AHRQ: The Evidence Agency Health-information technology: essential to improving health and health care Health-information technology: essential to improving health and health care Research opportunities Research opportunities

IT and Research Identify and prioritize critical questions: e.g., clinical variations as a reflection of inadequate knowledge Identify and prioritize critical questions: e.g., clinical variations as a reflection of inadequate knowledge Accelerate collection of relevant data Accelerate collection of relevant data Facilitate consistent measurement of key outcomes Facilitate consistent measurement of key outcomes Enhance participation of communities and stakeholders Enhance participation of communities and stakeholders “Reinvent” dissemination and translation “Reinvent” dissemination and translation

Shared Decisionmaking: Decisions and Outcomes Alternative 1 Alternative 2 Patient

IT and Population Health Enhance healthy behaviors – e.g., exercise, diet Enhance healthy behaviors – e.g., exercise, diet Facilitate data sharing within and across communities regarding potential threats to public health Facilitate data sharing within and across communities regarding potential threats to public health Facilitate registries (e.g., immunizations) and exchange of information across systems Facilitate registries (e.g., immunizations) and exchange of information across systems Linking data sources: target improvement efforts Linking data sources: target improvement efforts

Admissions per 100,000 Population -- County of Patient Residence Diabetes – Long-Term Complications Dallas-Fort Worth Hospital Council -- Data Initiative Hospital Discharge Data September 26, 2002 < 1 1 to to to to to 178 DFW Area Hospitals Texas

Example “Dorothy,” a very obese 32 year old woman, is seen for a suspected UTI and found to have diabetes “Dorothy,” a very obese 32 year old woman, is seen for a suspected UTI and found to have diabetes Her physician provides information about diet and exercise – but is only cautiously optimistic Her physician provides information about diet and exercise – but is only cautiously optimistic One month later, Dorothy returns, having lost 30 lbs – and shows Dr. C how she is using a customized application for her Palm Pilot to track her progress with diet and exercise One month later, Dorothy returns, having lost 30 lbs – and shows Dr. C how she is using a customized application for her Palm Pilot to track her progress with diet and exercise

IT Challenges Put IT that we know works into practice Put IT that we know works into practice Support the development and implementation of IT innovations Support the development and implementation of IT innovations Develop IT and other health care innovations that put the patient at the center of care Develop IT and other health care innovations that put the patient at the center of care Translate these new IT innovations into practice Translate these new IT innovations into practice Researchers, health care professionals, engineers, and others need to work together to ensure that clinical care design and infrastructure support the full potential of IT Researchers, health care professionals, engineers, and others need to work together to ensure that clinical care design and infrastructure support the full potential of IT

Critical Challenges Common data elements and definitions; build capacity to make improvements Common data elements and definitions; build capacity to make improvements Clear rules of the road: Who owns the data? Who decides what is in a record? Who can make changes? IRB’s Clear rules of the road: Who owns the data? Who decides what is in a record? Who can make changes? IRB’s Transparency of purpose of data collection and use Transparency of purpose of data collection and use Making it easy Making it easy

Secretary Thompson March 21, 2003 In the modern era, every century has had its major advance that has brought medical science another giant step forward. …. What will the major advance of the 21st century be? I am convinced that the medical revolution of our children’s lifetimes will be the application of information technology to health care.