Ensuring the Inclusion of Clinical Research in the National Health Information Network - May 9, 2006

Workshop Summary

On May 9, 2006, the National Center for Research Resources (NCRR) co-sponsored a workshop with the Agency for Healthcare Research and Quality (AHRQ) and the non-profit organization FasterCures. The workshop, entitled, Ensuring the Inclusion of Clinical Research in the Nationwide Health Information Network was held in Chevy Chase, Maryland.

The Office of the National Coordinator for Health Information Technology (ONC) is promoting the use of electronic health records (EHR) within medical organizations and also to support a nationwide health information network (NHIN) for health information exchange (HIE). At this time the emphasis of the NHIN work is on the information needs of clinicians providing direct patient care. There are opportunities in HIE systems and more generally via commercial EHR systems to also support clinical and translational research. Workshop participants were invited to discuss these opportunities and to explore how emerging HIE infrastructures could also support research requirements.

Workshop participants included academic researchers, healthcare providers, consumers, Federal and private payers, pharmaceutical and industry representatives, consultants, HIE participants, and officials from multiple government agencies. The keynotes were provided by Dr. Barbara Alving (NCRR), Dr. Carolyn Clancy (AHRQ), and Mr. Greg Simon (FasterCures). This was followed by a panel session that provided attendees with common ground on local prototypes of HIE and research. This highly interactive session was led by Dr. Chris Chute (Mayo Clinic), Dr. Paul Wallace (Kaiser Permanente), Dr. Brian Kelly (Accenture) and Dr. Keith Norris (Charles Drew University). Then, during breakout sessions, participants focused on developing a list of key steps needed to include research in the NHIN activities. The meeting participants identified two use cases, Patient Accrual and Phase Four Post-Market Surveillance, that would provide concrete examples of requirements and issues. In addition, many participants expressed the desire for an organizational voice for the clinical research informatics community citing particular examples from healthcare IT.

A final workshop report that summarizes the discussions and recommendations is now available.

For more information, please contact: Dr. Peter Highnam (highnamp@mail.nih.gov).