More than 4,000 stakeholders engaged in the EDM Forum through participation in national meetings, workshops, webinars, peer review, and social media platforms. These efforts are documented in more than 400 reports and resources over the course of the project, which was supported by a collaborative agreement from the Agency for Healthcare Research and Quality from 2010-2016.
Notable projects include the national meeting, Concordium; work on the 'portable consent' process implemented as part of Apple's Research Kit apps; and new approaches to develop and test electronic clinical quality measures and improve the interoperability of advanced care planning documents.
In addition, the peer-reviewed open access journal, eGEMs was founded by the EDM Forum and now continues to publish innovative manuscripts that address the use of electronic health data in learning health systems. Highlighted publications and resources are below and additional resources can be accessed by searing EDM Forum in the website search bar.
- Concordium 2016: Data and Knowledge Transforming Health
September 12-13, 2016, Crystal City, VA
Building on the success of Concordium 2015, this year’s conference will brought together individuals and organizations working with health data to integrate evidence, practice, and policy in the delivery system setting. With discussion-based, innovative session formats, the conference is designed to be a transdisciplinary convergence of individuals designing and executing strategies for delivery system transformation.
- Using Health IT to Advance the Use of Patient-Reported Outcomes in Practice
May 23, 2016, Washington, DC
- Concordium 2015: Data and Knowledge Transforming Health
September 21-22, 2015, Washington DC
Concordium 2015 brought together individuals and organizations working with big health data to integrate evidence, practice, and policy in the delivery system setting.
- June 2014: Stakeholder Symposium
June 7, 2014, San Diego
The 2014 Symposium featured scientific experts, delivery system and policy leaders, and innovators who are building learning health systems of the future.
- June 2013: Stakeholder Symposium
June 22, 2013, Baltimore, MD
Presentations focused on progress-to-date for building learning health systems to improve patient outcomes, as well as challenges and future research priorities for comparative effectiveness research (CER), patient-centered outcomes research (PCOR), and quality improvement (QI). The purpose of this meeting was to bring together experts to review the current state of PROs in clinical practice and opportunities to leverage health IT for their more effective use. Participants deliberated opportunities to make the most effective use of PROs in the care process and discuss the remaining barriers to their effective integration into clinical workflows, prioritized areas for potential investment to scale and spread the effective use of PRO tools in practice, particularly in primary and ambulatory care and for individuals with multiple chronic conditions. Discussion was also centered on the use of PROs from the patient perspective and using PROs to improve patient-centered care.
Reports & Publications
- Holve, Erin (2016) "Open Science and eGEMs: Our Role in Supporting a Culture of Collaboration in Learning Health Systems," eGEMs (Generating Evidence & Methods to improve patient outcomes): Vol. 4: Iss. 1, Article 12.
“Open science” includes a variety of approaches to facilitate greater access to data and the information produced by processes of scientific inquiry. Recently, the health sciences community has been grappling with the issue of potential pathways and models to achieve the goals of open science—namely, to create and rapidly share reproducible health research. eGEMs’ continued dedication to and milestones regarding the publication of innovative, useful, and timely research to help contribute to the push towards open science is discussed, as well as the EDM Forum’s new data sharing platform, CIELO. Although strides have been made, there is still more work to be done to help health sciences community truly embrace open science.
- D. Lavallee, K. Chenok, R. Love, C. Petersen, E. Holve, C. Segal, P. Franklin. “Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care” Health Affairs, Vol 35 No 4. April 2016.
The provision of patient-centered care requires a health care environment that fosters engagement between patients and their health care team. One way to encourage patient-centered care is to incorporate patient-reported outcomes into clinical settings. Collecting these outcomes in routine care ensures that important information only the patient can provide is captured. This provides insights into patients' experiences of symptoms, quality of life, and functioning; values and preferences; and goals for health care. Previously embraced in the research realm, patient-reported outcomes have started to play a role in successful shared decision making, which can enhance the safe and effective delivery of health care. We examine the opportunities for using patient-reported outcomes to enhance care delivery and outcomes as health care information needs and technology platforms change. We highlight emerging practices in which patient-reported outcomes provide value to patients and clinicians and improve care delivery. Finally, we examine present and future challenges to maximizing the use of patient-reported outcomes in the clinic.
- EDM Forum, "EDM Forum Review" (2015, October). Washington, D.C.
The 2015 EDM Forum Review focuses on a new innovation imperative for health data and knowledge to drive system improvement. The inaugural edition highlights key investments and initiatives that are promoting this evidence-based system transformation, including: significant support from the public and private sectors investing in EHD infrastructure and science; adoption of EHRs; patient engagement and a growing marketplace for mobile health technology; and new goals for value-based payment to ensure quality rather than volume. The results of an extensive literature review, including PCOR findings based on electronic health data, are provided.
Training & Resources
- Better Evidence. Better Decisions. Better Health (Part 3): Payer Perspectives
June 6, 2016
- Better Evidence. Better Decisions. Better Health (Part 2): Clinical Decision Support and User Experience
June 2, 2016
- Better Evidence. Better Decisions. Better Health (Part 1): e-Clinical Quality Measures
May 26, 2016
- The Social Network: Using Twitter to Translate and Disseminate Evidence
January 15, 2015
- Why Tweet? Building the Skills to Engage New Audiences and Promote Your Work
December 3, 2014
- Improving Understanding of Stress Exposure in Minority Communities with Asthma: Using Geographic Information Systems (GIS) Data Collection Methods
October 21, 2014
- Big Data and Big Crowds: Getting Useful Data from Text Fields Using Large Data Sets
October 15, 2014
- Analytical Methods for Learning Health Systems
September 9, 2014
- The Keys to Evaluative Methods for Quality Improvement Interventions: Understanding and Analyzing Context
July 1, 2014
- Models for Sustaining and Expanding Patient Involvement in PCOR
June 18, 2014
- Cultivating Collaboration - Sharing Data, Code, and Tools to Accelerate the Science of Healthcare
August 29, 2013
- Addressing Variations in Data Quality to Facilitate Multi-Institution Comparative Effectiveness Research
August 8, 2013
- Analyzing Patient Care Records Like a Trial to Develop New Knowledge about Clinical Practice
May 21, 2013
- User Experience and Research Computing: Enabling Human-Centric Data Analytics
May 16, 2013
- Publishing in eGEMs: Learning How to Learn from New Data in HSR
April 3, 2013