AcademyHealth Electronic Data Methods Forum (EDM) for Comparative Effectiveness Research

Patients, their families, and their health care providers are faced with numerous options when making decisions about their health. Limited evidence on the relative effectiveness of treatments can inhibit the ability to make informed care decisions. Comparative effectiveness research (CER) studies compare the benefits and harms of different health care treatments and interventions in specific, “real-world” settings. Several key issues have historically impacted the ability to conduct CER, as well as patient-centered outcomes research (PCOR) and quality improvement (QI). First, the data infrastructure–-including governance, data, methods, and training-–is often insufficient to capture detailed person-level data needed for CER because it lacks the ability to capture high-quality longitudinal data across sources of care. Second, there is a need for robust data and information systems that enable the creation of new methods and rigorous studies for CER.

The Agency for Healthcare Research and Quality (AHRQ) created the Electronic Data Methods (EDM) Forum to address challenges in the use of electronic clinical data (ECD), and discuss promising approaches to the analytic methods, clinical informatics, and governance needed for health research and QI. The forum was supported by AHRQ from 2010 to March 2017 under this and AcademyHealth Electronic Data Methods (EDM) Forum Second Phase.

The specific aims of the project were as follows:

• Convene key advisors to discuss best practices for collecting and analyzing ECD for CER, PCOR, and QI. 
• Engage stakeholders at a series of meetings to cultivate discussion of new ideas and potential solutions that address challenges related to the development of infrastructure and methods for CER, PCOR, and QI. 
• Develop and commission products on a range of topics, including scientific, clinical, technical, organizational, and governance challenges. 
• Disseminate information on current developments in infrastructure and methods based on the EDM Forum, as well as research findings from the research projects. 

In the first phase of the forum from September 2010 to August 2013, there were 11 research projects that represented a range of partnership models and geographic areas, and varied substantially in size, with both national and regional networks. The studies addressed all of AHRQ’s priority populations and conditions, with several projects focused on low-income populations, racial and ethnic minorities, and disease areas such as hypertension and asthma.

Collaborating with AHRQ, AcademyHealth developed the EDM Forum into a marketplace of people and ideas. The EDM Forum produced more than 150 high-quality deliverables, reaching more than 2,000 stakeholders and leaders through meetings and Webinars and engaging additional audiences through a portfolio of diverse online resources.