One Health Information Exchange’s experience in responding to the changing landscape Funding: AHRQ Contract ; State of Tennessee; Vanderbilt University. This presentation has not been approved by the Agency for Healthcare Research and Quality

 The MidSouth eHealth Alliance is a 501(c)3 organization that serves citizens in the Greater Memphis area ◦ Approximately 1.1 million citizens ◦ 25% of the citizens are at or below the poverty line  Began as a state funded planning project in August Awarded an AHRQ State & Regional Demonstration contract in September Also received additional state funding  Board was founded in February 2005  Board identified the first point of access to be the Emergency Department ◦ First emergency department began using the system on May 23, 2006 ◦ Today we have 5 hospital emergency departments with plans to implement the remaining 9 emergency departments in the three counties between now and the first quarter of 2008 © Vanderbilt Center for Better Health 2007

 Number of Users – approximately 250 ◦ # of Active Users in the Emergency Departments: 207  74 Clinicians – Physicians, Nurse Practioners, and Physician Assistants  85 Registered Nurses  48 Support staff  Percent of Patient Encounters in the ED who have data at other sites: between 40% & 50%  Total # of records in the system: 989,629  Total # of patients with information in the system: 811,000 (est.)  Total # of record linkages: 263,181  Average # Daily lab results reported: 80,000  Average # monthly Text Reports: 50,000  Average # monthly Encounter Data: 110,000  Average # monthly ICD-9 admission codes (Chief complaints): 34,000  Average # monthly "Reason For Visit" messages in text: 110,000  Average # monthly ICD-9 Discharge codes: 370,000  Average # monthly Procedure codes: 6,000  Average # monthly white blood counts (9 hospitals, March, 2007) 51,975  Average # monthly microbiology reports (May, 2007) 25,709  Average # monthly chest x-rays (May, 2007) 34,996 © Vanderbilt Center for Better Health 2007

 19 data feeds submit IP, OP, ED and claims information ◦ Patient identification/demographics ◦ Lab results ◦ Encounter data: date of service, physician and reason ◦ Medication history through claims ◦ Allergies (test) ◦ Dictated Reports  Imaging studies  Cardiology studies  Discharge summaries  Operative reports  Emergency room summaries  History and Physicals  Diagnostic Codes  Some medication history (TennCare Claims)  Etc. © Vanderbilt Center for Better Health 2007

 Our project was restricted to use in the Emergency Department only.  All work groups were focused on the same goal – initial use in the Emergency Department ◦ Financial Work Group ◦ Technical Work Group ◦ Privacy and Security Work Group ◦ Clinical Work Group  The privacy and security work group narrowed the use of the data to the purpose of diagnosis and treatment. © Vanderbilt Center for Better Health 2007

 From a technical perspective we were ready for initial use in the fall of 2005 but due to the privacy, confidentiality, security AND legal concerns, we did not begin using the system until May  Initially we believed once the Business Associate Agreements (BAAs) were in place, then we were fine – WRONG!  It took 11 months to achieve consensus (and trust) on our initial approach, to draft the data sharing agreements, and to write the policies.  In addition we spent approximately 3 months setting up the infrastructure to respond “real time” to changes in privacy, security and confidentiality. © Vanderbilt Center for Better Health 2007

 Who should have access? ◦ Any one involved in supporting the clinical care of the patient in the emergency department setting.  Should patients have the right to not participate in data sharing? ◦ All patients are notified that their data will be shared and the patient has the right to not share their data for clinical purposes.  What data will be shared? ◦ Know what the laws and regulations actually say versus what people believe they say ◦ We don’t share mental health or substance abuse data from those clinics or units.  We do share mental health drug claims  We do share mental health ICD9 codes ◦ All Participants have the right NOT to share specific patient populations ◦ Ultimately – if we are in doubt – we keep it out until we can get consensus © Vanderbilt Center for Better Health 2007

8 Participants in the MidSouth eHealth Alliance  are allowed the use of the data for designated Participants for the purposed of treatment and diagnosis only.  signed a Registration Agreement that designates them as a Data Provider and/or a Data Recipient.  signed a Data Sharing Agreement.  have a vote on the policy committee known as the Operations Committee ◦ Policy is recommended by the Operations Committee to the Board and the Board approves it. Patients who seek their care from Participants in the MidSouth eHealth Alliance -  are notified that their clinical data could be shared with the MidSouth eHealth Alliance..  have the right to “Opt Out” of the system. It is assumed they are in the system until they “Opt Out”. We relied heavily on the Markle Connecting for Health Policy Framework © Vanderbilt Center for Better Health 2007

 Following the Connecting for Health policy framework and model contracts, the board created the Operations Committee ◦ All Participants have a voice/vote in addition the MidSouth eHealth Alliance has a voice/vote  The Operations Committee has become the forum for discussing the privacy, security, confidentiality and legal landscape. They advise and educate the Board and others. ◦ Reviews and recommends policy changes ◦ Reviews requests for different uses of the data ◦ Reviews applications for participation ◦ Responds to specific agenda items from the Board – usually related to policy  The Operations Committee is involved in the expansion of scope and use of data discussions ◦ Expansion of scope beyond the emergency room  Ambulatory sites  Hospitalists ◦ Expansion of use of the data  Public health reporting  Reportable diseases  De-identified/Annonymized data for epidemiology studies  Case management © Vanderbilt Center for Better Health 2007

 To date our experience has been that consensus at the local level is more important than waiting for consensus to be achieved at a national level.  We do not believe that the decisions we make today are permanent; however, we have the infrastructure in place to respond.  One area that we continue to struggle with is the relationship with the consumer. © Vanderbilt Center for Better Health 2007

 When our project started, Tennessee was in the middle of a Medicaid “crisis” (TennCare)  The Participants were not comfortable with the issues and wanted time to learn about HIE before engaging the consumers  As a result a very limited dialogue with consumers occurred in the planning phase ◦ The Fact sheet was developed by an adult literacy group and there were others involved in the review  We know that engaging the consumer must go hand in hand with the organization’s communication plan  The consumer strategy should be addressed from a community perspective with other partners in the community © Vanderbilt Center for Better Health 2007

 Who is the consumer?  Who represents the consumer?  Should we focus on 100% of the consumers or a subset?  Given what we have done (and have not done), what is the best way to engage the consumer?  How do we know what consumers need and want from an HIE? 12 © Vanderbilt Center for Better Health 2007

Contact Information Vicki Y. Estrin © Vanderbilt Center for Better Health 2007