Informatics Best Practice Resources

To help Clinical Researchers and Healthcare QI professionals improve
patient outcomes together.


Common Rule – Final Update: How Legislation and Rulemaking Can Affect Your Quality Improvement Strategy

Prometheus Research and Compliancy Group joined forces for the second webinar in the series: The Next Healthcare Registry Frontier. We focus on the noteworthy changes to the Common Rule, how they will impact academic researchers and clinical caregivers, and, more importantly, the steps to take to take advantage of the opportunities in the future.

Length: 40 minutes plus Q&A

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The Next Healthcare Registry Frontier: Leveraging Research Data to Enhance Quality Improvement Initiatives

Leveraging data outside of the traditional care continuum can unlock valuable insights for use in risk adjustment, population-based patient management, and patient-provider engagement. Learn about important considerations and opportunities for enhancing your QI initiatives with data from research, patient-reports, and other non-traditional channels.

Length: 45 min

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Why Aren’t More Members Signing Up for Our Registry? Addressing This and Other Key Challenges Raised by Stewards at NQRN 2017

Is your registry fulfilling its promise of creating a virtuous cycle of performance improvement in your discipline? Many registries have achieved their initial goal of facilitating participation in CMS incentive payment programs, yet most formal and informal discussions at NQRN 2017 were dominated by the challenges stewards subsequently face with registry engagement, questionable data validity and quality, and the inability to analyze registry data to population health- and practice-level quality improvement. Learn the root causes of these challenges and the options for overcoming them—without having to “redo” your registry.

Length: 58 min


Talk is Cheap: Execution Tips for Successful QCDR Reporting

Are you tired of hearing all fluff and no substance on the topic of QCDR reporting? Are you in need of practical advice? Dr. Richardson has successfully guided several organizations through the entire registry reporting process. Webinar topics include quality measure selection tips, data collection methods, strategies to improve clinician engagement, and validation of registry reports.

Length: 60 min

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Qualified Clinical Data Registries Under MACRA and MIPS: The Exciting Road Ahead 

Confused about MACRA, MIPS, and the QCDR? Need tips for successful registry reporting under the new Quality Payment Program? Join us and guest speaker Dr. Emily Richardson, a nationally-recognized expert in federal quality reporting programs and QCDRs.

Length: 49 min

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The 3 Essential Pillars of a Sustainable QCDR Program

MIPS and other incentive payment systems have captured the attention of registry stewards. But you can’t lose sight of the three essential pillars to building a successful healthcare registry program. Prometheus’s approach, developed with a combination of healthcare informatics expertise and clinical data registry experience, empowers registry stewards to create QCDRs that meet the evolving needs of their organizations while staying relevant to their members.

Length: 49 min

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Evolution in Healthcare Data Interoperability Standards and Implications for Clinical Research

Our guest speaker, notable clinical informaticist Dr. Aziz Boxwala, CEO of Meliorix Inc., reviews the landscape of health information interoperability standards, focusing in particular on the FHIR specification from Health Level Seven.

Length: 45 min

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How Research Centers Can Leverage Proposed Changes to the Common Rule to Double Productivity

Proposed changes to the Common Rule are a rational liberalization of the rules for reusing research data and biospecimens. Learn how anticipated regulations will impact clinical research and the steps you should be taking now to prepare your research infrastructure for success.

Length: 56 min

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Multiply the Value of Your Data by Bridging the Clinic and Research Divide

Clinic and Research should enjoy a symbiotic relationship, but all too often lack the technical resources and governance processes to achieve true integration. Learn how to implement both a short- and long-term strategy for bridging the divide, including 5 concrete changes you can make today to improve data reuse.

Length: 50 min

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Leveraging ‘Data Marts’ to Explore Clinical Research Data in Highly Regulated Environments

Learn why the best practice for exploring clinical research data across multiple studies and data types is to leverage “data marts.” Research centers and multi-site research networks are using these specialized tools to securely access permittable data faster than traditional query interfaces.

Length: 45 min

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The Research Instrument Open Standard (RIOS)

A new standard promises to reduce the costs and improve the quality of multi-site data collection initiatives while simultaneously alleviating the burden on data providers. The NIH-funded, freely-available standard and set of conversion tools facilitates the exchange, reuse, and storage of EDC configuration for REDCap, Qualtrics, and RexDB-based systems.

Length: 52 min

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Data Request Portals: An Underutilized Revenue Model for Clinical Data Registries (Part 1)

Understand how to get started planning for a Data Request Portal (DRP), including prerequisites, challenges, and revenue models to consider prior to implementation. In Part 1 of this two-part series, we use a real-world case-study to introduce the opportunities and challenges of sharing clinical registry data.

Length: 1 hr

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Preparing to Use a Data Request Portal and How to Evaluate the Productivity of Your Shared Data (Part 2)

Implementing a Data Request Portal (DRP) requires intense scrutiny of clinical registry data up-front. Learn how to properly evaluate and describe your data for use in a DRP or other data sharing process, what it looks like to use a DRP, and how to measure the impact and productivity of the data you make available.

Length: 28 min

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What Does it Mean to Be ‘Open Source’ and What Are the Implications for Clinical Research? (Part 1)

Open source tools aimed at improving health-related research, such as Apple’s ResearchKit, are growing in number and popularity. These tools have the potential to accelerate software delivery timelines, reduce costs, and spur innovation. But they also create risks that an educated consumer of clinical research software should know how to recognize and manage. Learn how.

Length: 1 hr

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What Does it Mean to Be ‘Open Source’ and What Are the Implications for Clinical Research? (Part 2)

Health-oriented open source (OS) tools are growing in number and popularity.  Expand your understanding of the opportunities and risks of using OS tools by learning how to: (1) resolve conflicts around ownership of data and relevant works, (2) evaluate OS projects for maintainability, and (3) review OS business models for sustainability.

Length: 52 min

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Strategic Considerations for Mastering the Challenges of Clinical Data Registries

Building Clinical Data Registries (CDRs) that support acquisition, curation, and dissemination of research data poses a number of unique challenges. CDRs must operate within a complex ecology of data sources, consumers, and governance. Prometheus has identified seven informatics challenges that this complex ecology poses for CDRs, the questions you should ask when addressing research data management, and how RexStudy is engineered to ensure your research teams generate high-quality, reliable, and statistically sound data.

Length: 15 min

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Managing the Challenges of Modern Research Surveys

Online survey websites and smartphones facilitate faster and cheaper collection of large amounts of rich survey data. But these new opportunities come at a cost: faster and cheaper surveying demands greater attention be paid to data integrity. Understand the pros and cons of these methods, the pitfalls that often accompany them, and ways in which survey data can be maximally beneficial for research.

Length: 11 min

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Secondary Data Analysis: More Research With Less Data

There is growing pressure within the scientific community to more fully repurpose existing data. However, the challenges of working with secondary data means researchers must be strategic in their approach. Get a comprehensive overview of the advantages, limitations, best practices, and analytical tools available for conducting secondary data analysis.

Length: 10 min

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Exploring the Challenges and Opportunities of Leveraging EHRs for Data-Driven Clinical Research

EHRs can facilitate faster and cheaper clinical research investigations. By collecting diagnostic, intervention, and outcomes data at all levels of care and across time, EHRs capture a richer picture of clinical effects, relationships, efficiency, and more. However, the task of extracting research-grade data from oftentimes fractured EHR databases is non-trivial. Learn how to spot issues and understand your options.

Length: 14 min

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The Power and Potential of Automating Care

In its truest form, automation denotes a process that takes new information as it becomes available, synthesizes it, and makes a decision as to what the appropriate next action should be. Learn how automation is used in clinical research and what effect an integrated data management infrastructure has on the ability to employ automated decision-making.

Length: 12 min

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Introduction to Data Request Portals (DRPs): An Underutilized Revenue Model for Clinical Data Registries

Clinical Data Registries are emerging as one of the best tools for conducting research on quality of care and patient outcomes, but most never realize the full value of the information within their reach. Learn why Data Request Portals (DRPs) offer a new, sustainable revenue channel for registry stakeholders, and the prerequisites, challenges, and pricing models to consider while planning a DRP.

Length: 11 min

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Visual Query Combinators for BioMedical Query Mediation

We demonstrate a novel, combinator-based database query model that reduces the need for query mediation, empowering biomedical staff who are not database specialists to retrieve complex data from rich data stores. We show a open source visual query tool based on this model, and describe promising results from initial usability tests with novice and expert users.

Venue: American Medical Informatics Association Annual Symposium, 2017 Format: Poster, 471 KB

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Using Quality Data Model (QDM)-based Quality Reporting Document Architecture (QRDA)

Using the American Optometric Association’s (AOA) Measures and Outcomes Registry for Eyecare (MORE) as a case study, learn how to implement a standards-driven implementation guide for EHR vendors to submit both eCQM data for federal quality reporting and non-eCQM data for customized reporting needs with a document-based data transmission architecture. MORE is a clinical quality improvement registry available to over 35,000 US-based optometrists.

Venue: American Medical Informatics Association Joint Summits, 2016 Format: Poster, 318 kB

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Developing an Open Source Electronic Data Capture Instrument Converter and Library of Open Source Research Instruments

Reconfiguring EDC instruments for use by multiple EDC tools (such as REDCap, RexDB, or Qualtrics) results in a substantial waste of time and money and inhibits latter attempts to pool data across research projects. By making converters and libraries open source, researchers are not locked into one particular platform and can further develop the converters as needed. Learn how these converters were designed to streamline multi-site and multi-EDC research endeavors.

Venue: American Medical Informatics Association Joint Summits, 2016 Format: Poster, 1.5 MB

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How to Implement User-Centered Design to Build Research Informatics Tools that are Both Useful and Usable

Using the Marcus Autism Center’s research informatics core as a reference, learn how user-centered design can produce interfaces that are (a) useful (exclusive of unnecessary features, and inclusive of all necessary features), (b) usable (as measured by efficiency, learnability, memorability, error prevalence, and user satisfaction), and (c) appealing to end-users.

Venue: International Meeting for Autism Research (IMFAR), 2016 Format: Poster PDF, 2.1MB

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RexMart: Empowering Analysts to Configure Research Data Marts to Improve End-User Data Exploration

Researchers, healthcare organizations, and payers want to explore and analyze clinical data that has been integrated from multiple sources, such as electronic health records, claims data, and patient-reported outcomes. However, the volatility and both structural and semantic complexity of clinical data make this ideal vision of data repurposing difficult to achieve. Learn one approach to solving this problem using a tool called RexMart.

Venue: American Medical Informatics Association Joint Summits, 2015 Format: Poster, 1.8 MB

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An Institutional Strategy to Support Clinical Research with Centrally Managed Custom Data Repositories

Healthcare organizations face significant technical and organizational challenges to support clinical research. In this case study you’ll learn one approach to establishing a repeatable and sustainable model for deploying domain-specific research data repositories across an academic medical center to promote EHR data reuse.

Venue: American Medical Informatics Association Annual Meeting, 2014 Format: Poster, 1.8 MB

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Case Studies

Prometheus Research enables RogCon to Accelerate Therapeutic Development on SCN2A-based Disorders

In this case study, discover how Prometheus proposed using its agile data platform, RexRegistry, to deliver a Data Hub with the following properties:

(1) Facilitate the immediate demand for an SCN2A natural history study

(2) be extensible to support additional SCN2A clinical studies at reduced marginal costs; and

(3) enable data integration and reuse across all studies and potential partners (as allowed by data use agreements and law)

(4) and adhere to all patient privacy and protection laws governed by Institutional Review Boards (IRBs) and ethics committees.

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Length: 11 min