PracticeBased Research Networks PBRNs: a Resource for Translation Research

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Practice-Based Research Networks (PBRNs) a
Resource for Translation Research

• Lyndee Knox, PhD
• LA Net
• Associate Professor
• University of Southern California
• knox_at_usc.edu
• www.lanetpbrn.net

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If we want more evidence-based practice, we need
more practice-based evidence. Larry W. Green,
2004
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Overview

• What are Primary Care Practice-Based Research
  Networks or PBRNs?
• Case example LA Net
• Can they be a resource to RCMIs?

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What is a PBRN?

• A group of ambulatory practices devoted primarily
  to patient care -- affiliated with each other to
  investigate questions related to their practice
• Begun 30 years ago in US as a way to study
  process of primary care

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PBRNs in the US

• Insert Kevin Petersons map

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Overview stats

• 89 PBRNs in US
• 14.7 million patients
• 12,957 providers

From AHRQ National PBRN Resource Center Survey,
2005 N89 out of 111 identified PBRNs
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But why in primary care setting? In an average
month
1000 people
800 with symptoms
113 PCP visits
New Ecology of Medical Care - 2000
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Examples of Current Health Disparity Studies by
PBRNs

• Office-based modified colon endoscopy as an
  alternative to flexible sigmoidoscopy (LA Net)
• CAM Use and Disclosure by Latin American
  Immigrant Patients (LA Net)
• Longitudinal Study of Hyperlipidemia in a Primary
  Care Population (ProHealth)

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• Ethnic Disparity in the Use of Joint Arthroplasty
  (ResNet)
• Black womens health study cheek cell collection
  (SCOR)
• Gene polymorphisms in relation to cancer in black
  women and Black women's health study (SCOR)

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• Follow-up study for causes of illnesses in black
  women (SCOR)
• Diabetes in Southwestern Hispanic/Native American
  Adolescents and Young Adults (RIOS Net)
• WINGS Obesity Prevention in American Indian
  Children(WReN)
• Health Disparities Collaboratives (Clinical
  Regional Advisory Network-Region III, Inc. (CRAN)

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LA Net

• Located in LA County
• Founded 2002 w/ funding from HRSA/AHRQ
• 180/- providers, 20 clinic partners in Los
  Angeles County
• Fluid membership opt in or out based on
  interest

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Infrastructure

• STAFF
• .25 FTE Director
• 1 FTE Coordinator, .2 FTE Statistician, .2
  Research Assistant
• Governance council of providers (80)
  researchers (20)
• OTHER
• Website www.lanetpbrn.net
• Email list, listserv
• Annual forum, travel, supplies, seed grants for
  provider-generated studies
• Emergent electronic data collection
  infrastructure (ePCRN tools)
• Average Op budget for PBRNs 150K (small) to
  250K (larger) Green, 2006

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LA Net project generation

• TOP DOWN (40)
• Respond to RFAs from funding agencies
  collaborate with outside researchers
• BOTTOM UP (60)
• Study ideas come from providers
• Use participatory process called the Reflective
  Practitioner

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LA Net Studies (examples)

• Unsedated modified colon endoscopy as an
  alternative to flexible sigmoidoscopy
  provider-generated study to increase access to
  screening colonoscopy for publicly funded
  patients in response to 8-month wait times for
  patients w/indications
• Complementary alternative medicine use
  disclosure by Latino immigrant patients
  provider-generated study in response to negative
  health outcome in elderly Latino patient who
  failed to disclose CAM use to his provider
• National Childrens Study Pilot Study
  feasibility of using community providers to
  recruit and follow a longitudinal cohort of women
  likely to become pregnant/and later their infant
  into adulthood

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ePCRN

• To establish a National Primary Care Registry
• To give providers tools to generate quality
  monitoring reports for their clinic patients
• To facilitate recruitment of patients into RCTs
• Promotes translation of research findings into
  practice
• Provides investigational tools for Practitioners

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National Primary Care Registry Pilot Project
(ePCRN) - NIH
OKPRN
MAFPRN
Indiana FPRN
National Registry U of Minnesota MAFPRN Beta
100 practices nationally
PROHealth
APBRN
LA Net
AAFP NRN
PSARN
SNOCAP
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Registry Organization

• Local registry of patients
• Automatically generated
• Identifying information
• Diseases (ICD9s from billing)
• Labs
• Central registry of de-identified data
• Patient identifying information stripped out
• Remainder of data retained
• Automatically updated periodically from the local
  registries.

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LA Net Roll Out
ePCRN National tools ePCRN National tech support
PHASE 2
PHASE 3

PHASE 1
San Gabriel Family Practice
Community Clinic Partner/s
Broader expansion SPAs, LA Care, CCALA, RCMI as
possible partners
Billing (IDX) Lab (Quest)
Site registry
Site registry
USC Family Practice
Small practice partner/s
Billing (IDX) Lab (Quest)
Site registry
Site registries
Site registry
LA REGIONAL REGISTRY
NATIONAL REGISTRY
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PBRNs as resource/partners for RCMIs

• Identify patients for RCTs (through ePCRN
  infrastructure and other)
• Increase internal validity (e.g. applicability to
  practice setting) of studies through facilitating
  early and on-going input from frontline providers
  (and patients).
• Infrastructure to support implementation,
  dissemination and best practices research.
• PBRNS as learning communities for providers
  researchers.

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Locations of PBRNs and RCMI Sites
Pediatrics PBRN
Internal Medicine PBRN
Family Medicine PBRN
Nursing/Nurse Practitioner PBRN
Other PBRN (includes Community Health Centers and
multispecialty primary care networks)
RCMI Sites
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Existing PBRN RCMI (or PRC) Collaborations

• Centex PBRN Texas A M School of Rural Public
  Health application to establish an RCMI
• Collaborative pilot study w/Centex Employing
  Diabetes Self-Management Models to Reduce Health
  Disparities in Texas
• Samuel Forjuoh SFORJUOH_at_swmail.sw.org
• SpurNet U Texas School of PH PRC
• Evaluating the Effect of Professional Education
  on Provider Interventions for Informed Decision
  Making About Prostate Cancer Screening
  1,762,738
• Robert Volk bvolk_at_bcm.tmc.edu

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Summary

• PBRNs are available and they work
• They can be effective partners for RCMIs for
  translation research, and for increasing the
  relevance and eventual translatability of
  medical research