Development of the HMO Research Network: Development of the HMO Research Network: Insights and Lessons Learned Texas Medicaid Managed Care Quality Forum February 23, 2011 Sarah M. Greene, MPH Group Health Research Institute

Overview  What is the HMO Research Network?  How does it work?  What insights from our research network experience might be applicable in other settings?

In the beginning…(1994)  Frequent research partnerships among a small group of scientists based at a handful (n = 10) of integrated delivery systems  “Let’s form a Network!”  Coalition of the willing  Shared commitment to non-proprietary, public domain research  Objective: To improve population health and health care through collaborative research, dissemination, and sharing of best practices and methodologies

Health Systems + Research Centers =

Hallmarks of Member Sites  Stable presence in community  Mature  Comprehensive data  Defined population base  Commitment to research in the public’s interest  Combined population ~11M  Mix of healthcare delivery arrangements

Characteristics of our Population

Then and Now: Milestones  CDC funds Vaccine Safety Datalink (mid-1990s)  Founding member’s sabbatical at NIH (1997)  Establishment of the HMO Cancer Research Network  Spawned development of other topical networks in pharmacoepidemiology, CVD, mental health  Infrastructure building contract in 2005 – codified processes, created resources  Surfeit of ARRA funding, still more topic-specific networks (asthma, diabetes, hepatitis C)  Today: Invited by Francis Collins to propose a “Collaboratory” to facilitate broad platform of population-based research

370 researchers What do they do?

Many Networks within the Network HMOResearchNetwork TBD RN CRN CERT MHRN CVRNDRN SPAN Asthma PGRN Diabetes Hep C

How Does It Work? Governance  Fairly informal  Has functioned largely as an alliance of willing collaborators with little formal organizational structure  Board of Governors (1 Center Director/site) provides overall leadership; Chair rotates every 2 years  Committees oversee data development, stewardship of HMORN’s key assets (scientists, infrastructure, etc.)  Financial contributions from each support some centralized administration functions (accounting, communication, web)  Topical Research Networks are linked but still autonomous  Adolescence – changes are on the horizon

How Does It Work? Data  Model of choice: the “Virtual Data Warehouse” (VDW)  Could also call it a Distributed Data Warehouse - the data are real enough  but each site maintains its native data at its own site until needed for approved research activities  The VDW is…  …a series of dataset standards and automated processes at each of 11 sites,  that allow a SAS program written at one site to be run against all the others quickly  and with a minimum of site-specific customization

Schematic of How the VDW works Leadership through VDW Oversight Committee – technical and scientific experts who prioritize, set milestones, identify quality assurance issues

VDW Successes, Persistent Challenges  Assuages concerns related to centralized data repository  All sites have functional version of VDW with 6 data areas  Enables rapid turnaround on feasibility requests  “How may ____ cases were there at sites X, Y, Z in 2001?”  Ongoing opportunity to improve data quality  Aggregation across dozens of underlying legacy datasets  Yes, we do use it for research  Highly dependent on health system; no control over health system migrating to a new EHR  Site-to-site VDW implementation varies (for many reasons)  Significant investment of time and resources at site level  Federated data model defies easy explanation  Misperceptions are common – assume it’s automated (it’s NOT!)  Two-way communication as anomalies are identified

The HMORN Today Demonstrated success of HMORN projects = visibility Member $$ assessments initiated Dedicated contract to build HMORN- wide infrastructure Health reform debate, ARRA and CER priorities Membership growth and scientific synergies Scientific, Operational, & Financial Growth! Andgrowingpains

Insights, Implications, Lessons

Unique features of delivery system research Why do we do this? Advantages of scientific evidence from large, integrated health plans: – Reflects care in real-world, everyday settings – Follows large, stable, diverse populations over time; generalizable – Provides access to data on health outcomes and the cost of care – “the whole picture”

Ideal: Learning Health Care Systems

“Meaningful Use” of Research Findings  The HMORN enables reciprocal or bidirectional learning between the health research enterprise and national priorities, as well as between research and health systems

Hard, messy work  Knowledge translation = holy grail of biomedicine  MDs: 75 studies and 12 journals/day just to keep up

 Shared vision and purpose  Commitment to dissemination and diffusion of findings  Sustainable financial model  Vigilance about collaboration’s “burden to benefit ratio”  Alignment of approaches to data use/aggregation/sharing  Evaluation – check-in systematically w/research teams  Bring researchers & practitioners/providers together as often as possible to share views, ideas  Recognize and leverage diversity within the Network (of the population, the research disciplines, the practice settings) Ingredients for Research Network Success

Thank you!