Date post: | 14-Jan-2017 |
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SAFTINet: Scalable Architecture for Federated Translational Inquiries Network
An OverviewMarion R. Sills, MD, MPH
SAFTINet CU Website
SAFTINet Overview• Why: To support both research and quality improvement
• What: A practice-based research network and distributed data network combining clinical and claims data collected during routine care
• Who: A network of stakeholders interested in improving health care delivery and outcomes of underserved populations
SAFTINet Overview• Why: To support both research and quality improvement
• What: A practice-based research network and distributed data network combining clinical and claims data collected during routine care
• Who: A network of stakeholders interested in improving health care delivery and outcomes of underserved populations
What is the value SAFTINet is designed to add?
Impetus: U.S. Healthcare Crisis• Broken healthcare system• Health expenditures account
for 17.6% of US GDP• Highest cost does not =
highest value • System not patient-centered
Stakeholder Engagement in Solutions to Crisis
In order to have SAFTINet help stakeholders, stakeholders are engaged in designing and guiding SAFTINet.
Value to Providers
• Majority of medical treatments lack valid evidence of effectiveness• Especially with regard to• Specific patient groups
• Underserved populations• Vulnerable populations
• Specific settings• Primary care, especially in safety net settings• Real world settings (i.e., outside a well-controlled
trial)• Outcomes that matter to patients
How generalizable
is the evidence to my clinic patients?
Value to Patients
• Most of the outcomes assessed are related to an intervention’s short-term effectiveness, as driven by• What researchers are trained to
measure• What funders/industry fund
• Fewer focus on patient-centered outcomes• Quality-of-life• Long-term outcomes• Often we don’t know what matters most
to patients or even how to find out
I care. Your health is
important to me.
How do you know what outcomes matter to
me?
Value to Researchers• Barriers to researching highest
priority conditions and patients • Limited funding• Challenges to study neediest
patients in their usual settings• Vulnerable populations • Data quality problems as safety net providers are
under-resourced to• Perform ongoing data collection• Integrate data collection into their workflow• Apply diligence to data quality• Electronic data not always present or of consistent
quality• True of any non-research setting
• Poor data quality = invalid research
How can I access high priority
patients and their data? How do I
obtain good quality data?
Value to Policy-Makers
• Barriers to decision-making for highest priority conditions and patients • Data on these patients• Scattered, fragmented• Varied quality• Not timely
How do we measure how
well healthcare policy decisions
are working?
Policy-Makers Take Action• 2003: MMA Section 1013 authorizes AHRQ to conduct
and support outcomes research • 2009: ARRA provides $1.1 billion to NIH/HHS/AHRQ to
stimulate the fix • funds SAFTINet, 7 other PBRN Centers for Primary Care
Research• 2010: Patient Protection and Affordable Care Act (ACA)• Funded AHRQ to perform comparative effectiveness
research (CER) • Created the Patient Centered Outcomes Research Institute
(PCORI)
Policy-Makers Take Action• 2003: MMA Section 1013 authorizes AHRQ to conduct
and support outcomes research • 2009: ARRA provides $1.1 billion to NIH/HHS/AHRQ to
stimulate the fix • funds SAFTINet, 7 other PBRN Centers for Primary Care
Research• 2010: Patient Protection and Affordable Care Act (ACA)• Funded AHRQ to perform comparative effectiveness
research (CER) • Created the Patient Centered Outcomes Research Institute
(PCORI)
All fund CER/PCOR: development of better scientific evidence on the effects of intervention on patient-centered health outcomes.
You Say CER, I Say PCOR
PCOR• Assesses the benefits and harms of
interventions to inform decision making, highlighting comparisons and outcomes that matter to people.
• Incorporates a wide variety of settings and participants to address individual differences.
• Investigates optimizing outcomes while addressing burden to individuals, availability of services and other stakeholder perspectives.
CER• The generation and synthesis of
evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat and monitor a clinical condition, or to improve the delivery of care.
• Purpose: To improve health outcomes by developing and disseminating evidence-based information to patients, clinicians, and other decision-makers, responding to their expressed needs, about which interventions are most effective for which patients under specific circumstances.
Funding for SAFTINet
• 2009: American Recovery and Reinvestment Act (ARRA) – funded SAFTINet (via AHRQ)• Project requirements• Develop a distributed data network that collects and links data from
multiple and different healthcare delivery settings• Clinical data from electronic health records (EHR) • Medicaid claims data
• Demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER)• Capability for enhanced data collection (e.g., patient-reported outcomes)
• Other priority areas we targeted• Underserved populations• Stakeholder engagement• Measuring healthcare delivery system characteristics
SAFTINet Overview• Why: To support both research and quality improvement
• What: A practice-based research network and distributed data network combining clinical and claims data collected during routine care
• Who: A network of stakeholders interested in improving health care delivery and outcomes of underserved populations
Who (and Where)?
Practices by Organization
SAFTINet Overview• Why: To support both research and quality improvement
• What: A practice-based research network and distributed data network combining clinical and claims data collected during routine care
• Who: A network of stakeholders interested in improving health care delivery and outcomes of underserved populations
SAFTINet Goals and Progress
• Stakeholder Engagement• Research and QI• Infrastructure
Stakeholder Engagement• SAFTINet Objective• Establish and maintain a broad, safety-net focused, research
partnership and learning community to govern relationships, establish priorities, provide data quality oversight, and evaluate the purpose and value of the community’s effort
• Goal • Create a trusted, valued multi-state community of safety net
stakeholders and researchers to lead and participate in a learning community to address evidence-gaps relevant to the safety net populations – with special emphasis upon those populations served by Medicaid and State Child Health Insurance Program (SCHIP)
Stakeholder Engagement• What we are doing: ongoing engagement of stakeholders in
research (CER/PCOR) and quality improvement, including:• Evidence prioritization, generation, synthesis, and interpretation
and integration• Dissemination and application• Feedback and assessment
Stakeholder Engagement: Example 1• Stakeholders wanted more
standardized collection of patient-reported outcomes
• What mattered to providers, practice administrators and researchers• Asthma control• Medication adherence
• Stakeholders selected measures and implemented them• Asthma Control Test: useful to
providers, widely used• Medication adherence: providers
question validity, not widely used
Stakeholder Engagement: Example 1• Patient-reported outcome measure implementation
Researcher request
Organization 1 Organization 2 Organization 3 Organization 4
Frequency of Administration
At least annually; all visits preferred
Annually At all visits At all visits At hypertension visits (2x/year)
Mode of Administration (by whom, in what setting, with what materials)
No request made
Care coordinators administer by telephone as part of larger patient survey
Administered by medical assistant, responses recorded on paper upon check-in for visit
Administered as part of written pre-appointment survey at check-in
Electronic survey; Provider asks the questions out loud and records the answers in the EHR template
Stakeholder Engagement: Example 2• Stakeholders (providers, practice administrators) wanted a
measure of Medical Home – ness that had better face validity than existing measures
• Iterative process of review and adaptation of existing measures: the Delivery of Coordinated Care Survey (DoCCS)
• Administered at practice-level, self-report
What the DoCCS MeasuresDomain Example GoalsPersonal Clinician & Sustained Partnership
Clearly link patients to a clinician and/or care team so both the patient and provider/care team recognize each other as partners in care.
Personal Clinician Led/ Team-Based Care
Team-based care led by clinician
Coordinated and Integrated Care Link patients with community resources to facilitate referrals and respond to social service needs.
Patient/Family-Centered Care/Support Shared Decision-Making
Assess and respect patient and family values and expressed needs.
Quality Improvement & Safety Establish and monitor metrics to evaluate improvement efforts and outcomes and provide feedback.
Use of Organized Care & Evidence-based Medicine
Use point of care reminders based on clinical guidelines.
Access Provide scheduling options that are patient- and family -centered and accessible to all patients.
Engaged Leadership Provide visible and sustained leadership overall culture change and specific strategies to improve quality and sustain and spread change.
Registries, Performance Reporting and QI Programs
Use of patient tracking registries to monitor and inform clinical interventions for persons with specific health care needs.
Distributions: All DoCCS responses
Worse DoCCS score in practices• With more Latino and
Spanish-preferring patients
• Located in areas of greater population density
Stakeholder Engagement: Example 3• Stakeholders (providers, practice administrators) wanted more
standardized performance reporting across practices • What mattered to providers, administrators and researchers• Able to compare practices on data of comparable quality• Able to use data to meet reporting requirements
• Stakeholders are engaged in designing reports• Vermont practices have used these for both QI and reporting• Other practices: work-in-progress
Stakeholder Engagement: Lessons Learned• Balancing fidelity to protocol with flexibility• Aligning multiple stakeholder perspectives requires
significant compromise and investment of effort from all parties• Estimated 2000 person-hours• Many competing priorities
• Experience matters • Most successful organization had experience with PRO data
collection in the past, and an existing, proven data collection mechanism
Stakeholder Engagement• Focus of ongoing work: sustainability• Stakeholder engagement (focus groups, key informant interviews)
in adapting SAFTINet to best meet the ongoing needs of stakeholders
SAFTINet Research Goals
• Improve health care quality and value• Reduce health disparities• Generate evidence that will inform health policy, health
services delivery, and practice at the point of care• Target population:• Low-income• Chronic conditions• Cared for in public safety net clinics
SAFTINet Research Objective• To develop and enhance four sentinel cohort pairs of patients
distinguished by their health care delivery characteristics, which can support comparative effectiveness research• Asthma (pediatric and adult)• Hypertension• Hypercholesterolemia
DELIVERY SYSTEM FACTORS + PROCESSES OF
CARE + PATIENT FACTORS → OUTCOMES
SAFTINet Research Goal• To improve health care quality and value, and reduce health
disparities, in low income patients with chronic conditions who receive care in public safety net clinics by generating evidence that will inform health policy, health services delivery, and practice at the point of care
DELIVERY SYSTEM FACTORS + PROCESSES OF
CARE + PATIENT FACTORS → OUTCOMES
Research Conceptual Model
Research in Progress• Asthma• Does practice-level concordance with the Patient-Centered
Medical Home model impact asthma outcomes?• Does adoption of the Colorado Asthma Toolkit Program impact
asthma outcomes?• Other projects• Diabetes control• Methods projects
• Data quality methods• Multilevel analytic methods for clustered data
Asthma Toolkit Project
Patient-Centered Medical Home Project
Methods: Hypothesized Causal Structure
Asthma Control (tn)-ACT (good, poor, very poor control)-Exacerbations 1+ of: -ED/hospital -Steroid burst -Az visit cluster -Inhaled beta-agonist
Medical Home (tn)-Personal clinician-Teams-Coordination/integration-Pt centeredness-QI-Organized/EBM-Access-Leadership-Registries/perf rep-Enhanced asthma care
Intermediate (tn)-Attention to asthma -More data on asthma-Provision of care -More access for in-house az tx-Use of spirometry-Patient adherence to tx-Provider guideline concordance-Continuity of care (1o care util)-Smoking status
Practice-level variables (to)-Practice Size/Diversity -# providers (FTE) -# specialties in house-Practice location -MSA size (urban/rural) -Practice structure (FQHC, ACO)
-Practice population -Total unique pts, pt visits -Payer mix -Race/ethnicity overall mix -Total az patients
Patient-level variables (to)-Patient demographics -Age -Race & Ethnicity -SES (family income, size) -Gender (maybe) -Urban/rural
Patient-level variables (to)-Risk for poor asthma control -Prior exacerbations -Prior utilization -Prior ACT scores-Asthma severity -Persistent/Intermittent (meds)
Patient-level variables (t1)-Risk for poor asthma control -comorbidities (allergy, rhinitis/sinusitis, GERD)
SAFTINet Research Lessons Learned• Stakeholder engagement is valuable and resource-intensive• Essential to high-value data• More resource intensive than often projected• Focus on relationships, resources
• Real world data from diverse, non-research settings is messy• Data mapping and cleaning: very resource intensive • Complex data structure: complex modeling methods• Non-RCT trials or observational studies require rigorous methods
to address confounding and bias
Network Infrastructure• SAFTINET Objective• Build, deploy and assess a safety-net focused distributed research
network which combines ambulatory and inpatient clinical data and Medicaid claims and eligibility data for clinical and research purposes
• Goal• Build the technology necessary to support a valued, virtual
organization that securely federates clinical EHR and Medicaid/CHIP data, to promote quality care and provide enhanced data for comparative effectiveness research
Questions?
Distributed Data Networks
• Build on and expand existing electronic health infrastructure • Broad, scalable and sustainable systems• Enable the collection of longitudinal and comprehensive data
across diverse health care settings• Evaluate effectiveness of clinical interventions, processes of
care, and reimbursement initiatives for diverse clinical conditions, persons and settings
Web PortalQueries and
Data TransfersInternetInternal Network
TRIADROSITA
Local Data
Warehouse
Other EHR
Clear Text PHI
LimitedDataset
Grid-enabledDatabase
DMZ
Firewall Firewall
Technology infrastructure: Single Node
Technology Infrastructure: Medicaid
MedicaidData
sFTP
/Clea
r tex
t PHI
sFTP/Clear text PHI
sFTP/PPRL encrypted PHI
Web PortalQueries and
Data Transfers
Internet
Technology infrastructure: Multi-node
Common Data Model (OMOP)
Person
Drug_exposure
Condition_occurrence
Procedure_occurrence
Visit_occurrence
Observation
Procedure_cost
Drug_cost
Observation_period
Payer_plan_period
Provider
Care_site
Organization
Location
• Health Outcomes of Interest
• Drugs of Interest• Interventions
Cohort
Death
Drug_era
Condition_era
Standardized Vocabulary
SAFTINet Data Specifications