Key issues in conducting research using electronic clinical data

Supplement to Medical Care journal presents update on efforts to use electronic clinical data to improve health care

Researchers participate in the Electronic Data Methods (EDM) Forum to maximize shared experiences and learning for using electronic clinical data to improve medical care and making informed health decisions. A July supplement to Medical Care is a special 'EDM Forum' issue, highlights key issues researchers are facing, and innovative approaches that have been developed to build the infrastructure and conduct research using electronic clinical data. The journal is published by Lippincott Williams & Wilkins, a part of Wolters Kluwer Health.

The papers in the EDM Forum supplement share the experience and knowledge gained by eleven research teams, focusing on developing electronic clinical data systems to support comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). The EDM forum supplement is freely available on the journal website.

"These efforts have the shared goal of developing innovative strategies to address challenges in traditional research studies and data sources in order to generate evidence and help build a learning health system that can improve patient outcomes," comments Erin Holve, PhD, MPH, MPP of AcademyHealth, the leading national organization serving the fields of health services and policy research.

AcademyHealth leads the EDM Forum to "identify, synthesize, and share lessons learned" from eleven research projects, funded by the U.S. Agency for Health Research and Quality. The goal of the three-year project is to demonstrate proof of concept in using electronic clinical data to answer important questions about which medical treatments are most effective (CER) and to provide evidence that patients and professionals can use to make informed health care decisions (PCOR). The EDM Forum is supported by the Agency for Healthcare Research and Quality (AHRQ) through the American Recovery & Reinvestment Act of 2009, Grant U13 HS19564-01.

The supplement articles address three main areas:

• Analytic methods-the critical challenges of conducting CER, such as ensuring the quality of data in research networks and selecting appropriate groups of patients for studies of specific research questions.
• Clinical informatics-practical issues related to gathering and collecting electronic clinical data, including building networks of shared data.
• Data governance-issues related to using data from different sources, including measures to protect patien5t safety and privacy are protected.

The ultimate goal is to create a "learning health system," using routine data to make care ever more efficient and effective. Dr Holve adds, "Highlighting lessons learned from the ambitious and diverse projects participating in the EDM Forum is an exciting challenge on its own; the PROSPECT, DRN, and Enhanced Registry projects are big, complex scientific efforts that require the coordination and collaboration of diverse scientific disciplines and care delivery organizations across the country"

The EDM Forum promotes sharing of information and expertise among researchers and with health organizations, agencies, and other interested stakeholders. In addition to the supplement in Medical Care, the EDM Forum shares information through an open access website at http://www.edm-forum.org.