Collaborative Projects

The EDM Forum supports collaborative projects to advance the methods and infrastructure for research and quality improvement (QI) using electronic health data.

The collaborative projects are designed to stimulate creative strategies to address shared challenges and foster collaboration among a diverse set of national leaders, with the overall goal of improving health for patients and populations. Project collaborators work with the EDM Forum to engage a variety of perspectives over the course of the year through efforts that promote exchange and collaboration across disciplines and sectors (including researchers, policymakers, health care professionals, vendors, payers, and patients). At the conclusion of the awards, the projects will contribute actionable, generalizable, and timely tools to the health care community.

Due to the end of the current grant period for the EDM Forum, there will be no Call for Proposals for new Collaborative Projects in 2016. Please stay tuned for other ways to engage with us and be sure to subscribe to the EDM Forum monthly newsletter.

View the list of 2015-2016 Projects and past projects below.

2015-2016 Collaborative Projects

Honoring Choices Virginia: Ensuring Access to Advance Care Plans Across Settings and Providers

J. Brian Cassel, PhD, Virginia Commonwealth University | Robin Clair Commings, MSHA, Honoring Choices Virginia | Michael Matthews, BS, MPH, Connect Virginia | Michael Gallagher, Unival, Inc. | Debbie Condrey, MPH, Virginia Department of Health

A significant challenge in health care is the difficulty in sharing advance care planning documents across providers and settings or via the statewide Advance Directive Registry. This project will document strategies to improve interoperability of advance care planning documents across settings to ensure patient's needs and wishes are met. This project brings together three health systems in Richmond Virginia that have adopted the Respecting Choices model for advance care planning, forming Honoring Choices Virginia under leadership of the Richmond Academy of Medicine.

Together, the health systems will develop an action plan and technical strategy document, which will be provided and institutions will be asked to commit to changes needed for sharing these documents. The approach will be summarized in a community engagement template that will be made available to promote the spread of strategies other communities may replicate.

Enabling Analysis of Nurse-Sensitive Patient Outcomes from Electronic Health Data to Improve Patient Care Quality

Blaine Reeder, Ph.D., University of Colorado | Karen Sousa, PhD, RN, University of Colorado | Mary Beth Makic, PhD, RN, University of Colorado Hospital | Mustafa Ozkaynak, PhD, University of Colorado | Oliwier Dziadkowiec, PhD, University of Colorado | Jessica Bondy, MSHA, University of Colorado | Bryant Doyle, University of Colorado 

A gap exists between the vast quantity of EHR data that captures the impact of nursing care on patient outcomes, and the ability to associate nursing interventions with outcomes such as a patient's pain. To address this gap, colleagues from the University of Colorado Health System, Centura Health, and the VA Eastern Colorado Healthcare System will develop generalizable guidance for a data system designed to enable comparison of nurse-sensitive patient outcomes across healthcare systems.

Past Collaborative Projects

2014-2015 Projects

Collaborating to Promote the Collection and Use of Patient-Reported Outcomes in Clinical Care

Patricia Franklin, M.D., M.B.A., M.P.H., University of Massachusetts of Medical School | Kate Eresian Chenok, M.B.A., Chenok Associates | Danielle Lavallee, Pharm.D., Ph.D., University of Washington | Rebecca Love, M.P.H., Total Joint Replacement Registry | Elizabeth Paxton, M.A., Kaiser Permanente National Implant Registries

It has been said that patient engagement is the new blockbuster drug. Yet, capturing the patients’ experience and perspectives with patient-reported outcomes (PROs) is challenging, often due to practical challenges with data collection at the point of care. This project brings together experts from leading surgical quality registries (FORCE-TJR, CERTAIN, and the Kaiser Permanente Total Joint Registry) with patients, clinicians, and policymakers to identify generalizable lessons and generate a toolkit of promising strategies to improve collection and use of PROs in health care.

Closing the Loop in the Learning Health System – Distributed Networks for Electronic Quality Measure Development and Evaluation

Daniella Meeker, Ph.D., University of Southern California | Jon D. Duke, M.D., M.S., Regenstrief Institute | Michael Kahn, M.D., Ph.D., University of Colorado | Philip R.O. Payne, Ph.D., Ohio State University | Lisa S. Schilling, M.D., M.S.P.H., University of Colorado

In response to the need for greater synergies between ongoing investments in research systems and Meaningful Use, this project will build a platform that enables health researchers, quality improvement experts and operational leaders to develop, test, and implement electronic clinical quality measures that are reflective of diverse settings and populations. The project will build on the work of national networks and initiatives supported by AHRQ, PCORI, CMS, among others.

Towards a Learning Health Care System: Lessons from Big Data in Astronomy and Space Science

Stanislav George Djorgovski, Ph.D., California Institute of Technology | Basit Chaudhry, M.D., Ph.D., Tuple Health, Inc | Daniel Crichton, Ph.D., Center for Data Science and Technology Jet Propulsion Laboratory

Collaborative science in health has a lot to learn from other disciplines, and Astronomy has tackled many similar challenges with big data analytics that are relevant to health and health care. The collaborators will explore these similarities and generate a framework for interoperability, standards, and governance in the health care data environment based on practical experiences and tools across astronomy and related space science fields.

Collaborative Informatics Environment for Learning on Health Outcomes (CIELO)

Philip Payne, The Ohio State University

Project Period: October 2013 - September 2014

The CIELO platform provides members of the research community with access to an open-source/-standards “app store” for data analysis and software sharing. Researchers can access others’ applications, contribute back their own, and build upon each other’s contributions to extend or assemble modules in new analytical “pipelines.” A well-functioning community and platform will reduce time and cost of research while enhancing the reproducibility and transparency of data analysis. Visit CIELO

Sharing Health Data Across Networks

Michael Kahn, University of Colorado, Denver Anschutz Medical Campus

Project Period: October 2013 - September 2016

Health data networks (encompassing networks developed for CER, PCOR, and QI) are diverse in the data domains they contain, the structure, codes, and terminologies that represent data elements and values, and the technical and governance structures used to access data. Many of these data networks have evolved over time to meet the needs of each network’s investigators, participants, and funding sources; thus, over time, have become highly optimized to meet the needs of a large set of stakeholders and competing needs. Yet, the vision of one universal health research network with a single data structure, terminology, and technical and governance infrastructure will be extremely challenging to implement because of strong local and organizational influences. Research and QI efforts using ECD should engage markedly heterogeneous clinical care environments to achieve its mission of understanding what does and does not work in actual clinical practice.

This project is addressing how best to leverage the diversity of existing and future data networks while enabling cross-network data sharing, best practices, and technologies. The project will convene a core set of data “owners” and key data “consumers” for a workshop to articulate the value proposition, essential use cases, and initial obstacles to data network harmonization.

Methods Workgroup

Michael Stoto, Georgetown University | Daniella Meeker, University of Southern California

Project Period: October 2013 - September 2014

A host of methodological topics require further thinking and development with respect to their application in complex adaptive health systems where many CER, PCOR, and QI studies using electronic clinical data are conducted. This collaborative methods project focused on a set of two methods papers that synthesize emerging best methodological practice and propose new techniques to address key analytic challenges.

Patient-Centered Portable Consent (PC2.0)

John Wilbanks, Sage Bionetworks

Project Period: October 2013 - September 2014

Persistent issues with data exchange and the confusion around portability of patient records are barriers to understanding the population’s health and health outcomes. While a comprehensive policy solution to portability of patient information and preferences about the use of their data is not likely in the near term, there are innovative non-policy strategies to address the problem that seek to put the patient at the center of the solution.

The Sage Bionetworks Governance project ( led by Mr. Wilbanks, is a multi-step “portable consent” process that allows patients to consent to share their data with multiple research projects. To date, this process has largely been focused on research in clinical genomics, but it has an underlying architecture that could also facilitate health services research, particularly with additional specification to allow individuals to consent for specific purposes over a defined time period. This collaborative project, Patient-Centered Portable Consent (PC2.0), will identify new opportunities to adapt the Consent to Research Platform for use in clinical networks for research and quality improvement (QI).

Visit the Sage Bionetworks website to view and use the Participant-Centered Consent (PCC) toolkit, informed by this project. The toolkit is built for people who are designing clinical studies and who wish to make their informed consent user-centered, rather than document-centered. It contains the building blocks of a visual, interactive approach to informed consent. The PCC toolkit lets its users create visual summaries of consent forms, mapped to key underlying text, for use in software or print.

Read this blog about this collaborative project's involvement in Apple's ResearchKit, a framework for running clinical studies on the iPhone.

Piloting a User-Interface for Distributed Analytics

Xiaoqian Jiang, University of California, San Diego, Division of Biomedical Informatics

Project Period: October 2012 - September 2013

Grid LOgistic REgression (GLORE) is a distributed logistic regression model, which learns from sensitive patient data hosted at remote institutions without actually exchanging these data. GLORE improves statistical power for decision making and provides stronger privacy protection to patient data. This project built an easy-to-use interface for GLORE to be more accessible to biomedical researchers and encourage future developments for privacy-preserving distributed predictive models.

View the paper published in eGEMs based on this work. Visit the WebGLORE site and manuscript published in JAMIA for more information about the tool and model.

Data Quality Collaborative (DQC): Strategies for Assessing Data Quality

Project Lead: Michael Kahn, University of Colorado Denver Anschutz Medical Campus

Project Period:October 2012 - September 2013

The Data Quality Collaborative (DQC) is a working group of leading experts from teams using electronic clinical data to address the need to ensure that CER and PCOR findings derived from diverse and distributed data sources are based on credible, high-quality data; and that the methods used to assess and report data quality are consistent, comprehensive, and available to data consumers. The major aim of the collaboration is to develop a comprehensive data quality assessment framework and guidelines for the CER community, including draft recommendations that can guide the development of new analytic and reporting methods specifically directed to data quality assessment and reporting for CER studies.

Visit the DQC community to access recent publications and discussions related to this work.

Governance Toolkit: Pathways to Success for Multi-Site Clinical Data Research

Deven McGraw, Center for Democracy and Technology (CDT)

Project Period: September 2012 - August 2013

This project examined, through the conduct of three to five case studies of EDM Forum participants, the legal and governance issues that arose during multi-site, clinical data research projects and the approaches used that enabled research participants to successfully manage those issues and move forward with the research. These “pathways to success” could be helpful in enabling other institutions and organizations to participate in such multi-site studies.

Read the eGEMs publication based on this work. Visit the Governance Toolkit for more information and to submit your governance resources.

Advancing Human-Computer Interaction Research to Enable a Learning Healthcare System

Philip Payne, The Ohio State University

Given inherent human cognitive strengths in the areas of pattern recognition and the interpretation of complex or heterogeneous data sets, the ability to present data, information, and knowledge in a manner that supports or enables such capabilities is extremely important. These issues are even more salient in the areas of CER, PCOR, and QI, wherein researchers and decision-makers are attempting to integrate and reason on emerging and multidimensional data sets from a variety of sources. Unfortunately, investments in foundational and applied research in Human Factors, Human-Computer Interaction (HCI), and Data Visualization (which can be collectively organized as pertaining to User Experience or UX research and development) may not be commensurate with the rapidly changing landscape of biomedical research and quality improvement efforts. This project aims to develop an actionable HCI research agenda and initiate a community-wide dialogue targeting the needs of learning health systems, so as to mobilize the healthcare-focused HCI investigator community and realize broad-scale impact related to such work.

Read the eGEMs article published in June 2013 based on this work.