Health care has been slow to keep up with the information and communications technology trends that have been affecting other sectors. The financial services industry started using automated teller machines (ATMs) almost 50 years ago, and health care consumers often wonder why today’s electronic health records (EHRs) are not farther along. At the turn of the 21st century, less than one out of five physicians were using an EHR system and they could not share the information with anyone outside their own office or clinic.
After the American Recovery and Reinvestment Act was passed in 2009, with $35 billion in financial incentives for clinicians to go electronic, the interest in using electronic clinical information exponentially increased. Clinicians wanted to use electronic health data not just to track individual patients, but also to share it with other practitioners caring for the same patients to improve the quality and coordination of their care. There was also interest in combining patient data from multiple settings to do more powerful predictive clinical research with bigger data sets.
But every one of these potential advancements enabled by health information technology came with its own set of complicated issues and questions: How can we ensure organizations and systems data collect data in a consistent, standardized way so it can be shared and compared more easily? How can we make sure the data we’re collecting provides information on the most important problems we need to solve? How can we ensure patient-centeredness in research? What are the best ways to incorporate patient-reported outcomes (PROs) into EHRs so we get a fuller view of the patient experience?
And once we find a good way to do these things, how do we spread that knowledge and encourage others to follow our lead? In 2010, the Agency for Healthcare Research and Quality (AHRQ) awarded 11 grants to research teams across the country to develop electronic health data (EHD) infrastructure to address some of health care’s most challenging conditions (e.g. diabetes, asthma, obesity) and populations (low income women and children, and individuals with disabilities). AHRQ made a strategic decision that these projects would be more successful if they could work on their shared challenges together.
Enter the Electronic Data Methods (EDM) Forum. Funded by AHRQ and led by AcademyHealth, the EDM Forum soon grew from 11 grantees representing approximately 200 researchers in 2010, to more than 4,000 diverse stakeholders in 2016. EDM Forum’s model of collaboration began with a comprehensive environmental scan to determine who was already working with electronic clinical data and how they were doing it; convening research teams to identify shared challenges; then continued with priority and agenda setting and initiation of collaborative projects; and finally with the generation and dissemination of solutions. The full body of work is documented in more than 400 reports and resources as well as in a peer-reviewed open access journal created during the project.
We’ve traced the story of the EDM Forum in a new report. Read it here to learn how, over the course of six years, the EDM Forum convened a diverse variety of talented people, supported their collaborative efforts, and disseminated their findings to existing and new audiences.