IHE Quality, Research and Public Health QRPH domain April 05, 2009 Changing the Way Healthcare Connects

IHE Quality, Research and Public Health Committee Domain overview Expansion of domain’s scope Quality Quality, Research and Public Health International participation Quality Reporting for accreditation Public  Health Case Reporting Public Health Immunization Bio-surveillance Case Reporting to CDC with EMR Alert Cancer Registry Patient Safety Reporting Drug Safety Reporting Clinical Research Trials IHE Quality, Research and Public Health Committee

IHE Quality, Research and Public Health Committee Exchanging data between concurrent and retrospective data collection initiatives Exchanging data according to and beyond the core measures of: Joint Commission CMS Core Measures Quality standards Accreditation Certification Determining site standards in data exchange models when sites are participating at different levels in different programs IHE Quality, Research and Public Health Committee

IHE Quality, Research and Public Health Committee Provide standardized linkages and integration of health data between clinical care and public health to reliable health information exchanges. Provide Interoperability between clinical Electronic Health Record (EHR) systems and Public Health information systems (EHR-PH Systems). IHE empowers public health domains such as research, chronic care, personal health record, surveys, obesity, trauma, pharmaco-vigilance to communicate. Data collected is not just medical, also environmental, housing data, socio-economic data, geographic data, Avoids duplication of efforts, unnecessary costs and provides accuracy. Timely and appropriate response to outbreaks, adverse drug reactions, and bio-surveillance threats. This is an international problem addressed through IHE-based solutions IHE Quality, Research and Public Health Committee

IHE Quality, Research and Public Health Committee Clinical Research IHE Quality, Research and Public Health Committee

White Paper - New Born Screening Newborn Screening programs are public health programs administered by regulatory health authorities in the US and internationally Bloodspot screening detects metabolic genetic and hematologic disorders through laboratory testing and the hearing screening is meant to identify permanent conductive, sensory or neural hearing loss using physiologic testing technologies This information is not associated and not transmitted to the proper public health authorities timely or accurately so that all newborns receive proper care and in the long term appropriate tracking and follow-up. The IHE NBS white paper is describing the coordination between various IHE profiles such as IHE Lab, IHE PCC, IHE XDS in a way that they provide the necessary means to coordinate the two newborn screening and tests and take appropriate action. IHE Quality, Research and Public Health Committee

Chronic Disease Management Data Exchange Value Proposition Data exchange among providers improves patient care. For example, pediatric asthma is treated by a pediatrician, pulmonologist, and allergist . When all providers have access to the information about the management of the chronic ailment, they can better coordinate care Gathering chronic disease management information by public health registries is improved by a common format (syntax) and terminology. The semantic interoperability also allows comparisons among registries, which is important for measuring quality across regional and national entities Scope Describes the interaction between a data source and a data consumer Covers both unsolicited updates and query transactions Key Technical Properties Built upon the Care Management PCC profile HL7 Version 3 messages – Care Record DSTU

Profile Mother and Child Health Periodically a national survey1 in France collects information on Conditions of pregnancy and delivery, the responsible birthing facility, and post-partum follow-up, parent’s social status, quality of care and the newborn preventive screening tests Results helped to have a better vision of the sanitary map for the perinatal period and make decision about future national investments to be done on perinatal healthcare systems infrastructure (370 M $ /3 years just in France, for example) IHE MCH profile provides the capability to capture health indicators directly from EHR as established by national programs (for example enabling social services to intervene if need arises and provide data to governmental public health agencies. Epidemiological studies are conducted on annonymized data so that necessary programs are established to meet the population needs. 1. National perinatal survey in France, 2003 - INSERM, Ministry of Health

White Paper - Pseudonymization In order to sent data necessary for certain instances of these use cases (clinical research, public health, patient safety and quality accreditation organisms) some data needs to be pseudonymized or annonymized Data protected by professional discretion in a primary setting is sent to a third party for important analysis The utilisation of anonymisation/pseudonymisation means is most of the time needed for secondary use/repurposing/population health bio-surveillance. Different mechanism of protection are in place. IHE Quality, Research and Public Health Committee