SAFTINet Overview for EDRC
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SAFTINET is a scalable architecture that establishes a practice-based research network to improve healthcare delivery and outcomes for underserved populations through the integration of clinical and claims data. It addresses the barriers to effective research by engaging stakeholders in the design and methodology of data collection for better patient-centered outcomes. The initiative focuses on high-priority health conditions and aims to generate robust evidence to inform policies and practices in safety-net clinics.
SAFTINet Overview for EDRC
- 1. SAFTINet: Scalable Architecture for FederatedTranslational Inquiries Network An Overview Marion R. Sills, MD, MPH
- 3. 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
- 4. 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?
- 5. 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
- 6. Stakeholder Engagement in Solutions to Crisis In order to have SAFTINet help stakeholders, stakeholders are engaged in designing and guiding SAFTINet.
- 7. 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?
- 8. 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?
- 9. 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?
- 10. 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?
- 11. 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)
- 12. 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.
- 13. 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.
- 14. 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
- 15. 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
- 16. Who (and Where)?
- 18. 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
- 19. SAFTINet Goals and Progress • Stakeholder Engagement • Research and QI • Infrastructure
- 20. 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)
- 21. 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
- 22. 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
- 23. 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
- 24. 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
- 25. What the DoCCS Measures Domain Example Goals Personal 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.
- 26. Distributions: All DoCCS responses Worse DoCCS score in practices • With more Latino and Spanish- preferring patients • Located in areas of greater population density
- 27. 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
- 28. 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
- 29. 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
- 30. 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
- 31. 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
- 32. 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
- 34. 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
- 36. Patient-Centered Medical Home Project Dependent Variable (Aims 1, 2b, 2c) Patient level asthma outcomes Independent Variable Practice level Patient-Centered Medical Home (PCMH) characteristics Intermediate Variables (Aims 2a, 2b, 2c) Practice- and patient-level asthma process measures Covariates Patient- and practice-level risk factors for asthma outcomes and for PCMH model concordance of patient’s practice Figure 1. Conceptual Model
- 37. Methods:HypothesizedCausal 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)
- 38. 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
- 39. 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
- 40. Questions?
- 41. 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
- 42. Web Portal Queries and Data Transfers InternetInternal Network TRIADROSITA Local Data Warehouse Other EHR Clear Text PHI Limited Dataset Grid-enabled Database DMZ Firewall Firewall Technologyinfrastructure: SingleNode
- 44. Web Portal Queries and Data Transfers Internet Technology infrastructure: Multi-node
- 45. CommonData 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
Editor's Notes
- #4: AHRQ ARRA OS: Recovery Act 2009: Scalable Distributed Research Networks for Comparative Effectiveness Research (R01) Goal: to enhance the capability and capacity of electronic health networks designed for distributed research to conduct prospective, comparative effectiveness research on outcomes of clinical interventions. Project Requirements: As a part of the project requirements, SAFTINet will develop an electronic health network that collects and links data from multiple and different healthcare delivery settings . This network will demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER).
- #5: AHRQ ARRA OS: Recovery Act 2009: Scalable Distributed Research Networks for Comparative Effectiveness Research (R01) Goal: to enhance the capability and capacity of electronic health networks designed for distributed research to conduct prospective, comparative effectiveness research on outcomes of clinical interventions. Project Requirements: As a part of the project requirements, SAFTINet will develop an electronic health network that collects and links data from multiple and different healthcare delivery settings . This network will demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER).
- #6: 2007 –The IOM workshop publication, The Learning Healthcare System, identifies several characteristics of a LHCS, including “a culture that emphasizes transparency and learning through continuous feedback loops, care as a seamless team process, best practices that are embedded in system design, information systems that reliably deliver evidence and capture results, and results that are captured and used as feedback to improve the level of practice and the state of the science.” 2009 - $1.1 Billion -ARRA Allocations Research $681 M (62%) Data Infrastructure $268 M (24%) Dissemination and Adoption $132 M (12%) Administrative support, inventory, evaluation $ 19 M ( 2%) Also included a report by IOM for national CER priorities, establishment of the Federal Coordinating Council for CER, and the creation of PCORI 2010 -PPACA Subtitle D Established Patient-Centered Outcomes Research Institute (PCORI), a non-profit corporation with duties including: Identifying national research priorities Establish a research agenda to address these priorities Carry out the research agenda (systematic reviews, primary research, funding) Disseminate Defined comparative clinical effectiveness research - Research evaluating and comparing health outcomes and the clinical effectiveness, risks, and benefits of 2 or more medical treatments, services, and items such as health care interventions, protocols for treatment, care management, and delivery, procedures, medical devices, diagnostic tools, pharmaceuticals (including drugs and biologicals), integrative health practices, and any other strategies or items being used in the treatment, management, and diagnosis of, or prevention of illness or injury in, individuals. Why this new CER paradigm? Improved understanding of the comparative clinical effectiveness of healthcare interventions. Contribute to knowledge, counter inefficiencies in time, cost, and limited applicability of RCTs Take advantage of the size and expansion of potentially interoperable administrative and clinical datasets. Innovative study designs and statistical tools. Need to build learning systems in which clinical effectiveness research is a more natural by-product of the care process. Engage providers, patients, systems, payers
- #12: 2007 –The IOM workshop publication, The Learning Healthcare System, identifies several characteristics of a LHCS, including “a culture that emphasizes transparency and learning through continuous feedback loops, care as a seamless team process, best practices that are embedded in system design, information systems that reliably deliver evidence and capture results, and results that are captured and used as feedback to improve the level of practice and the state of the science.” 2009 - $1.1 Billion -ARRA Allocations Research $681 M (62%) Data Infrastructure $268 M (24%) Dissemination and Adoption $132 M (12%) Administrative support, inventory, evaluation $ 19 M ( 2%) Also included a report by IOM for national CER priorities, establishment of the Federal Coordinating Council for CER, and the creation of PCORI 2010 -PPACA Subtitle D Established Patient-Centered Outcomes Research Institute (PCORI), a non-profit corporation with duties including: Identifying national research priorities Establish a research agenda to address these priorities Carry out the research agenda (systematic reviews, primary research, funding) Disseminate Defined comparative clinical effectiveness research - Research evaluating and comparing health outcomes and the clinical effectiveness, risks, and benefits of 2 or more medical treatments, services, and items such as health care interventions, protocols for treatment, care management, and delivery, procedures, medical devices, diagnostic tools, pharmaceuticals (including drugs and biologicals), integrative health practices, and any other strategies or items being used in the treatment, management, and diagnosis of, or prevention of illness or injury in, individuals. Why this new CER paradigm? Improved understanding of the comparative clinical effectiveness of healthcare interventions. Contribute to knowledge, counter inefficiencies in time, cost, and limited applicability of RCTs Take advantage of the size and expansion of potentially interoperable administrative and clinical datasets. Innovative study designs and statistical tools. Need to build learning systems in which clinical effectiveness research is a more natural by-product of the care process. Engage providers, patients, systems, payers
- #13: 2007 –The IOM workshop publication, The Learning Healthcare System, identifies several characteristics of a LHCS, including “a culture that emphasizes transparency and learning through continuous feedback loops, care as a seamless team process, best practices that are embedded in system design, information systems that reliably deliver evidence and capture results, and results that are captured and used as feedback to improve the level of practice and the state of the science.” 2009 - $1.1 Billion -ARRA Allocations Research $681 M (62%) Data Infrastructure $268 M (24%) Dissemination and Adoption $132 M (12%) Administrative support, inventory, evaluation $ 19 M ( 2%) Also included a report by IOM for national CER priorities, establishment of the Federal Coordinating Council for CER, and the creation of PCORI 2010 -PPACA Subtitle D Established Patient-Centered Outcomes Research Institute (PCORI), a non-profit corporation with duties including: Identifying national research priorities Establish a research agenda to address these priorities Carry out the research agenda (systematic reviews, primary research, funding) Disseminate Defined comparative clinical effectiveness research - Research evaluating and comparing health outcomes and the clinical effectiveness, risks, and benefits of 2 or more medical treatments, services, and items such as health care interventions, protocols for treatment, care management, and delivery, procedures, medical devices, diagnostic tools, pharmaceuticals (including drugs and biologicals), integrative health practices, and any other strategies or items being used in the treatment, management, and diagnosis of, or prevention of illness or injury in, individuals. Why this new CER paradigm? Improved understanding of the comparative clinical effectiveness of healthcare interventions. Contribute to knowledge, counter inefficiencies in time, cost, and limited applicability of RCTs Take advantage of the size and expansion of potentially interoperable administrative and clinical datasets. Innovative study designs and statistical tools. Need to build learning systems in which clinical effectiveness research is a more natural by-product of the care process. Engage providers, patients, systems, payers
- #16: AHRQ ARRA OS: Recovery Act 2009: Scalable Distributed Research Networks for Comparative Effectiveness Research (R01) Goal: to enhance the capability and capacity of electronic health networks designed for distributed research to conduct prospective, comparative effectiveness research on outcomes of clinical interventions. Project Requirements: As a part of the project requirements, SAFTINet will develop an electronic health network that collects and links data from multiple and different healthcare delivery settings . This network will demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER).
- #19: AHRQ ARRA OS: Recovery Act 2009: Scalable Distributed Research Networks for Comparative Effectiveness Research (R01) Goal: to enhance the capability and capacity of electronic health networks designed for distributed research to conduct prospective, comparative effectiveness research on outcomes of clinical interventions. Project Requirements: As a part of the project requirements, SAFTINet will develop an electronic health network that collects and links data from multiple and different healthcare delivery settings . This network will demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER).
- #20: AHRQ ARRA OS: Recovery Act 2009: Scalable Distributed Research Networks for Comparative Effectiveness Research (R01) Goal: to enhance the capability and capacity of electronic health networks designed for distributed research to conduct prospective, comparative effectiveness research on outcomes of clinical interventions. Project Requirements: As a part of the project requirements, SAFTINet will develop an electronic health network that collects and links data from multiple and different healthcare delivery settings . This network will demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER).
- #21: New mission, vision, values and objectives as of 2nd convocation: MISSION: The mission of the SAFTINet Partner Engagement Community is to develop and sustain partner engagement, knowledge dissemination, and collaborative decision making to support the goals of the SAFTINet project as well as enhance quality of care and practice management for the SAFTINet partner organizations. Vision: Improving the health of the SAFTINet communities by enhancing the quality of care through research in a collaborative and efficient manner. Values: High quality health service to all people. Sharing knowledge and resources among engaged stakeholders to enhance respective practices. We are committed to clinically driven practice-based research and inquiry. We are committed to lowering barriers to practice participation in research and collaborative learning. Objectives: Advise SAFTINet research teamand SAFTINet Comparative Effective Research team regarding studies, priorities and appropriate Patient Reported Outcomes for various diseases. Prioritize studies that are informative, practical and realistic/feasible to clinics and providers. Ensure data is captured appropriately to maintain secure, up-to-date data repository that can be queried by research team to be presented to SAFTINet partner organizations. Liaise between the Partner Engagement Community, Clinical, and IT components of the respective SAFTINet partner organizations.
- #28: Site 117 may be an outlier = missing both pt centered care and access domains, scores all very low – 1s and 2s.
- #32: AHRQ ARRA OS: Recovery Act 2009: Scalable Distributed Research Networks for Comparative Effectiveness Research (R01) Goal: to enhance the capability and capacity of electronic health networks designed for distributed research to conduct prospective, comparative effectiveness research on outcomes of clinical interventions. Project Requirements: As a part of the project requirements, SAFTINet will develop an electronic health network that collects and links data from multiple and different healthcare delivery settings . This network will demonstrate capabilities for conducting methodologically rigorous Comparative Effectiveness Research (CER).
- #34: 2007 –The IOM workshop publication, The Learning Healthcare System, identifies several characteristics of a LHCS, including “a culture that emphasizes transparency and learning through continuous feedback loops, care as a seamless team process, best practices that are embedded in system design, information systems that reliably deliver evidence and capture results, and results that are captured and used as feedback to improve the level of practice and the state of the science.” 2009 - $1.1 Billion -ARRA Allocations Research $681 M (62%) Data Infrastructure $268 M (24%) Dissemination and Adoption $132 M (12%) Administrative support, inventory, evaluation $ 19 M ( 2%) Also included a report by IOM for national CER priorities, establishment of the Federal Coordinating Council for CER, and the creation of PCORI 2010 -PPACA Subtitle D Established Patient-Centered Outcomes Research Institute (PCORI), a non-profit corporation with duties including: Identifying national research priorities Establish a research agenda to address these priorities Carry out the research agenda (systematic reviews, primary research, funding) Disseminate Defined comparative clinical effectiveness research - Research evaluating and comparing health outcomes and the clinical effectiveness, risks, and benefits of 2 or more medical treatments, services, and items such as health care interventions, protocols for treatment, care management, and delivery, procedures, medical devices, diagnostic tools, pharmaceuticals (including drugs and biologicals), integrative health practices, and any other strategies or items being used in the treatment, management, and diagnosis of, or prevention of illness or injury in, individuals. Why this new CER paradigm? Improved understanding of the comparative clinical effectiveness of healthcare interventions. Contribute to knowledge, counter inefficiencies in time, cost, and limited applicability of RCTs Take advantage of the size and expansion of potentially interoperable administrative and clinical datasets. Innovative study designs and statistical tools. Need to build learning systems in which clinical effectiveness research is a more natural by-product of the care process. Engage providers, patients, systems, payers
- #35: Current Activities: To demonstrate the capability to collect and accurately link patient-level clinical and claims data necessary for CER of delivery systems Lay the groundwork to conduct prospective observational studies and clinical trials Comparative effectiveness of different health care delivery system factors for disease control Patient Centered Medical Home Integrated Mental Health Care Four disease cohorts: Adult and childhood asthma, hypertension, hypercholesterolemia Mental health comorbidities Technology efforts Technology efforts Establishing a data model that accommodates the needs of CER Technology necessary for federated queries
- #36: Current Activities: To demonstrate the capability to collect and accurately link patient-level clinical and claims data necessary for CER of delivery systems Lay the groundwork to conduct prospective observational studies and clinical trials Comparative effectiveness of different health care delivery system factors for disease control Patient Centered Medical Home Integrated Mental Health Care Four disease cohorts: Adult and childhood asthma, hypertension, hypercholesterolemia Mental health comorbidities Technology efforts Technology efforts Establishing a data model that accommodates the needs of CER Technology necessary for federated queries
- #37: Current research activities (same notes in previous slide): To demonstrate the capability to collect and accurately link patient-level clinical and claims data necessary for CER of delivery systems Lay the groundwork to conduct prospective observational studies and clinical trials Comparative effectiveness of different health care delivery system factors for disease control Patient Centered Medical Home Integrated Mental Health Care Four disease cohorts: Adult and childhood asthma, hypertension, hypercholesterolemia Mental health comorbidities Technology efforts Technology efforts Establishing a data model that accommodates the needs of CER Technology necessary for federated queries
- #44: Specific Aim 2.1 Implement and deploy data Extraction, Transformation and Loading (ETL) processes with terminology standardization; patient data capture tools; data de-identification, and use of the Translational Informatics and Data Management Grid (TRIAD) technology and research portal. Specific Aim 2.2 Share state Medicaid entities’ claims and eligibility data with their respective clinical partners via secure File Transfer Protocol (sFTP). Implement local data de-duplication using local Protected Health Information (PHI) data elements Specific Aim 2.3 Implement TRIAD nodes for Medicare participants. Establish prototype grid-based identity management solution using hashed identifiers. Deploy production SAFTINet federated grid nodes and TRIAD portal
- #46: SAFTINet is dedicated to building a foundation of understanding the scope of data sharing Clinics may query their own data without permission Receiving data – prevent disclosure Network administration – non-patient, non-provider identifiable information only for the purpose of verifying network function Grid-enabled data base with limited data set Stipulates obligations under HIPAA, and the definition of a LDS (45CFR Part 164.514(e) Dates (birth, death, service), zip code, city, state
- #47: Research networks address the growing demand for using health care information to develop scientific evidence that assists health care providers, patients and policy makers to make informed decisions about appropriateness, safety, comparative effectiveness and outcomes of various health care treatments. The network is intended to be efficient and reusable so that users can routinely collect, query and analyze health care data that address disparate needs and identify knowledge gaps in the delivery of care. (AHRQ description of distributed networks, http://www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=465&pageaction=displayproduct)