Efficient & Rapid Translation of Dementia Discovery IDND-PBRN Malaz Boustani, MD, MPH Chief Director of Research Indianapolis Discovery Network for Dementia.

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Presentation transcript:

Efficient & Rapid Translation of Dementia Discovery IDND-PBRN Malaz Boustani, MD, MPH Chief Director of Research Indianapolis Discovery Network for Dementia Center Scientist and Assistant Professor of Medicine Indiana University center for Aging Research Scientist Regenstrief Institute, Inc

5/24/2015 indydiscoverynetwork.com2 Translational Cycle From Discovery To Delivery Basic science Lab Epidemiology Clinical Observation Promising Intervention Clinical trial testing Approved Intervention Post-Marketing testing Guideline Development System and Provider Implementation Time: 17 yrs Cost: $800 million AD recruitment rate: < 1% T1 T2 T3

5/24/2015 indydiscoverynetwork.com3 WHY We Need IDND The IOM and the NIH-Roadmap –recommend urgent "Re-Engineering of the Clinical Research Enterprise." –Suggest building Practice Based Research Network with The lens of complexity theories The tools of information technology

5/24/2015 indydiscoverynetwork.com4 RI HIT Infrastrucutres INPC SPIN DOC4DOC IU-PBRN

5/24/2015 indydiscoverynetwork.com5 IDND-Practice Based Research Network MCP PCP Wishard HCS Clarian HCS St Vincent HCS Community HCS St Francis HCS PCP: Primary Care Practice MCP: Memory Care Practice HCS: Health Care System.

5/24/2015 indydiscoverynetwork.com6 Specific Aims Use the foundation of the mature INPC electronic medical records system and the valuable research operation experience of the IU-PBRN to translate IDND into a practice based dementia research network capable of –Specific aim 1: Capturing reliable dementia related patients’ data such as laboratories, imaging, medical care, and health outcomes. –Specific Aim 2: Managing, summarizing, and electronically presenting captured data to various eligible researchers –Specific Aim 3: Facilitating dementia research activities by identifying potential subjects for various studies and providing a real time health outcome data such as health care utilization and dispensed medications.

5/24/2015 indydiscoverynetwork.com7 The Information System IDND-PBRN Provide fast access to data about older adults with dementia, a registry index must be created. Contain the needed elements (those identified as essential by the clinicians and the researchers), which we can call in this case a “standard dementia data set” (SDDS); Increase completeness of data and representation of the population, multiple ways for data to enter the INPC are needed; this includes both electronic and non-electronic routes of data entry and data entry by multiple people in disparate sites of care; Make information quickly available to support decision-making, accessible new reports or views that are most relevant to this population are needed. These data must be available to the key authorized clinical and research stakeholders; and Automatically identify and report selected sentinel events such as hospitalization or Emergency room visit.

5/24/2015 indydiscoverynetwork.com8