Efficient & Rapid Translation of Dementia Discovery

IDND-PBRNMalaz Boustani, MD, MPHChief Director of Research

Indianapolis Discovery Network for DementiaCenter Scientist and Assistant Professor of Medicine

Indiana University center for Aging ResearchScientist

Regenstrief Institute, Inc

www.indydiscoverynetwork.com

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Translational CycleFrom Discovery To Delivery

Basic science LabEpidemiology Clinical

Observation

Promising Intervention

Clinical trial testing

Approved Intervention

Post-Marketing testing

Guideline Development

System and Provider ImplementationTime: 17 yrs

Cost: $800 millionAD recruitment rate: < 1%

T1

T2 T3

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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

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RI HIT Infrastrucutres

• INPC

• SPIN

• DOC4DOC

• IU-PBRN

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IDND-Practice Based Research Network

MCP

MCP

MCP

MCP

MCPPCP

PCP

PCP

PCP

PCP

PCP

PCPPCP

PCP

PCP

PCP

PCP

PCP

PCP

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.

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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.

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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.

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General Principle Local application Delivery process Complex adaptive systems need a mission, shared value, or a vision to implement change

Clinicians and researchers need identify potential patients with dementia in a standard and consistent methods across the various memory and primary care clinics affiliated with IDND Clinicians and researchers need to reach consensus on the data elements relevant to both dementia care and dementia research that should be collected, stored, and tracked.

A two day initial retreat with presentations on the process of working together on a shared vision as well as technical training on the opportunities to improve communication and tracking via electronic records and on improving care through collaborative care models

Complex adaptive systems need time and space to adapt and plan change

The implementation teams need support (time and funding) for regular meetings and retreats.

Monthly face-to-face meetings with time supported by IDND

Tension and discomfort are normal in introducing a change within complex adaptive systems

The reflective adaptive process provides a structure to facilitate discussion, feedback, and review.

The training during the retreats and the monthly meeting will be based on a shared process and guide and infused with an independent facilitator.

Implementation design must incorporate the diversity of people and program affected by the change

Implementation teams are comprised of a matrix of people with the relevant roles, expertise, skills, and perspectives

Deliberate construction of a diverse interdisciplinary team consists of at least a clinician from each memory care clinic, a primary care clinic representative, a dementia clinical researcher, a IT programmer and HIT expert, data manager, a study coordinator, and at least two research assistants.