1. April 28,2009 Vicki Y. Estrin Vanderbilt Regional Informatics vicki.y.estrin@vanderbilt.edu Funding: AHRQ Contract 290-04-0006; State of Tennessee; Vanderbilt University. This presentation has not been approved by the Agency for Healthcare Research and Quality © Vanderbilt Center for Better Health 2009

2.  In 2004, Tennessee’s Medicaid program (TennCare) was creating a financial burden for the state. Governor Bredesen in February 2004 recognized that health IT (HIT) was one approach that must be considered for reducing costs and improving quality.  There were a number of initiatives started in 2004 (one started in 2003)  While there was a “burning platform” with TennCare, the Governor recognized the need for HIT for all of Tennessee’s citizens  The state identified the need to invest in infrastructure: technical and personnel ◦ Established broadband network that reaches all 95 counties ◦ Established the eHealth Department and named Antoine Agassi as the first director. Melissa Hargiss is the current director of eHealth

3. HIE activity continues to expand at the regional level. One additional challenge for Tennessee and its exchanges - Tennessee borders 8 states In addition to the local/regional exchanges, the state has also supported a state-wide effort with an organization called Shared Health. Shared Health is a for-profit subsidiary of BCBST and is primarily focused on the TennCare population

4. How it all began… The Governor asked health care leaders in Memphis to embark on a 6 month planning process to understand the benefits of HIT and HIE. This effort began in August 2004. The MidSouth eHealth Alliance was born from this planning effort. The state received funding to be an AHRQ State and Regional Demonstration (SRD) project. The proposal was to start in Memphis and extract lessons learned that would benefit the rest of the state. State provided additional funds Total funding for five years: – $7.2 million from the state – $4.8 million from AHRQ Collectively the Memphis health care leaders agreed that sharing patient information to improve the quality of care (and hopefully reduce costs) was NOT an area of competition. The Board had its first official meeting on February 23, 2005. – Initial Participants included all of the health systems, largest specialty clinic (400+ providers), two safety net clinics and one Medicaid MCO

5.  The MidSouth eHealth Alliance is a 501(c)3 organization that serves citizens in the Greater Memphis area (three counties in SW Tennessee and citizens in MS and AR) ◦ Approximately 1.2 million citizens ◦ 25% of the Shelby County citizens are at or below the poverty line ◦ 20% of patients are from bordering states  On May 23, 2009 we will celebrate our third anniversary as a functioning exchange  Participants include (* founding organization)  Baptist Memorial Health Care* (5 facilitates one in MS)  Christ Community Health Services* (FQHC – 5 clinics)  Memphis Children’s Clinic (6 ambulatory care clinics)  Memphis Health Center (4 primary care clinics)  Methodist Healthcare* (7 facilities include LeBonheur Children’s Medical Center)  The Regional Medical Center*  St. Francis Hospital* and St. Francis Bartlett* (owned by Tenet Healthcare)  St. Jude Children’s Research Hospital*  Shelby County/Health Loop Clinics* (10 primary care clinics)  UT Medical Group* (400+ providers)  Amerigroup TLC* (TennCare MCO)  Stopped participating 10/31/2008  Data submitted till that date is still available to users

6.  Operational in 14 emergency departments in three counties plus one facility in Southaven, MS  Hospitalist in 4 of the health systems have access to the system  14 safety net providers access the system daily for patient care  Total # of users in clinical settings: 380+  Total # of encounters: 4.7 million ◦ Receive 140,000 encounters/month  Total # of patients with data: 1,284,000  Total # of patients with clinical data: 1,018,000  Monthly ICD-9 admission codes: 34,000  Monthly labs: 2,400,000 ◦ Monthly microbiology reports: 26,000 ◦ About 80,000 lab results per day  Monthly chest x-ray reports: 35,000

7.  The Memphis Bioworks Foundation  The Memphis Business Coalition  Universities ◦ Tennessee Tech ◦ University of Memphis ◦ University of Tennessee (Memphis) ◦ Vanderbilt University  State Collaborations ◦ State of Tennessee ◦ Tennessee Hospital Association ◦ Tennessee HIMA ◦ Tennessee HIMSS ◦ Hospital Alliance of Tennessee  National Collaborators ◦ Other AHRQ funded state and regional demonstration projects  Indiana  Colorado  Delaware  Rhode Island  Utah ◦ eHealth Initiative ◦ Markle Foundation ◦ Robert Wood Johnson Foundation ◦ AHIMA ◦ HIMSS ◦ Agency for Healthcare Research and Quality (AHRQ)  HIT National Resource Center

8.  Policy should drive technology whenever possible  The technology is a means to an end – it is not the primary focus  Standards are important but DON’T let them be the barrier to moving forward; the standards will evolve  Patient data is NOT something to compete over  Where the data resides is less important than clear understanding of who is responsible for the data integrity  Start small and simple; build to bigger and better  Clinicians are hungry for data and frustrated with current approaches to getting it  You MUST have the hard conversations – if everyone is agreeing without dialogue you are in trouble  Accept that this is will be considered “one more thing” on a long list of priorities for participating providers ◦ Be willing to adjust project plans to accommodate multiple priorities from multiple organizations  Keep the “I” low in ROI

9.  Governance ◦ Building a solid coalition/governance structure that enables building consensus between organizations with a strong history of competition  Technology ◦ Lack of data standards, data integrity, matching patient/records  Privacy and Security ◦ What is required in terms of policy and legal documents to share patient data for clinical purposes  Sustainable Business Model ◦ Define the value and identify future funding/revenue to sustain the operations  Consumer Involvement ◦ Identify the customers and consumers – what are their needs and what will they expect from this type of system

10. “It is political science, not computer science”

11. Focus on the individual Be part of a system of care Never compete over information Build version 1.0 not 6.0 Concentrate on what works and take incremental steps Start where there is energy and synergy Start somewhere, not everywhere Keep costs low Allow evolution Eliminate complexity Find new ways to collaborate Strive for transparency Do NOT avoid the hard conversations Trust is essential Culture trumps strategy Policy Technology is an enabler not a driver

12.  For what purpose(s) would the data be used?  What was the role of HIPAA?  Who would have access to the MidSouth eHealth Alliance data?  What data will be shared and what data will not be shared?  Would we allow a patient to not share their data?  Would we tell or notify the patient about the data sharing?  Will the patient consent for data sharing?  What would we audit and track?  What policies must be in place for all to feel comfortable with sharing data?  Who will write the policies?  Who will enforce the policies?

13.  They may not be considered “Best” by your community  There are guard rails that must be considered in all conversations: ◦ What do HIPAA and other federal laws and regulations say? ◦ What do your state laws and regulations say?  And then there are areas that are critical to moving forward ◦ How do organizations in your community interpret and put into operation laws and regulations? ◦ How does data exchange happen today in a paper or electronic world? ◦ What rights (if any) should a patient have beyond what the law allows?

14.  All Participants were included  Representation included: ◦ HIM professionals ◦ Privacy officers ◦ Security officers ◦ CIOs ◦ In-house counsel ◦ Clinicians  Anyone who wanted to participate could even if they were not a Participant Organization  Meetings were 2 – 4 hours in length and facilitated to encourage a “healthy approach” to conflict ◦ Conflict is good ◦ If you don’t have any conflict you have bigger troubles than you realize!

15.  We talked with our peers and colleagues throughout the state and around the country ◦ Held a 2 day statewide meeting at the Vanderbilt Center for Better Health to facilitate the dialogue in December 2005 ◦ Held a 2 day nationwide meeting at the Vanderbilt Center for Better Health to facilitate the dialogue in September 2006  We restricted the use for treatment and diagnosis in the Emergency Department setting ◦ This gave us a concrete “it” ◦ The work group drafted a “Granting Access” document that defined all the areas of agreement. This was a working document and created focus for the work we had to do ◦ We developed scenarios given our setting. Our scenarios became more real because we could discuss how this system would fit practically into the workflow © Vanderbilt Center for Better Health 2009

16.  We educated ourselves on HIPAA ◦ Focused on how we transfer this data now under HIPAA and defined how the HIE would impact the interpretation ◦ Acknowledged that if we have problems now with HIPAA compliance – the HIE will not fix the problems ◦ We tried to reconcile all the consent processes in the community but quickly decided to focus on the Notification process instead (TN does not require patient consent for treatment)  We ultimately did impact the consent process at the individual participant level; however it was more effective to approach this issue through notification ◦ There are many areas where the interpretation does NOT impact the HIE – we only focus on the areas related to the HIE. In other words we do not have agreement on the interpretation of all that is in HIPAA  We identified where HIPAA was not enough ◦ The work group felt strongly that the issue of Patients’ Rights could not be bound by HIPAA  Examples:  For the purpose of treatment does the patient need to be notified their data is going to be shared?  For the purpose of treatment does the patient have the right to not participate? © Vanderbilt Center for Better Health 2009

17.  We look at other law regarding specific data types ◦ If in doubt, we keep it out ◦ Have found conflicts in how specific data types are “handled” according to state law (or there is conflict in the interpretation of the law) ◦ Worked with in-house counsels and HIM directors to understand how they deal with conflicts in the law today – this process has worked well  We identified where differences between organizations were NOT ok and where there needed to be community standard ◦ Example: All Participants in the MidSouth eHealth Alliance must notify patients their data will be shared – this is a community standard  We identified where differences are ok ◦ Example: How a patient is notified is up to the Participating Organization. It is documented so all Participants are aware of how it is being done.  We developed a one page FACT sheet that is per policy to be used by all organizations for patient education about the MidSouth eHealth Alliance ◦ It was developed with the help of an adult literacy class ◦ How is it used is up to the Participant © Vanderbilt Center for Better Health 2009

18.  Security was addressed separately from Privacy ◦ Much about security is wrapped in technology ◦ Fear of identity theft must be acknowledged and addressed both in policy and technology  Audit logs were deemed to be critical to success in monitoring both security and privacy issues ◦ The audit process of an HIE is different than for an organization ◦ The appropriateness of a look up is difficult if not impossible for an HIE to judge through the audit logs  The HIE knows records not patients ◦ The MidSouth eHealth Alliance Participants were adamant that they retain the relationship with the patient so all requests for audits will be through a Participant who per policy will coordinate the request with the MidSouth eHealth Alliance and other Participants ◦ From Day 1 we have taken a “big brother” approach ◦ We have caught “offenders” through the audit logs – none were a HIPAA violation but most were a violation of the MidSouth eHealth Alliance policies © Vanderbilt Center for Better Health 2009

19. While we addressed the list of issues in parallel we began working on the data sharing agreements (2005 – 2006 – 8 month process) Our approach to the data sharing agreements was to start with the Connecting for Health Model Contract language and then begin an education process with the goal of spending as little as possible on attorney fees. The time spent discussing and debating the privacy, confidentiality, and security issues were an invaluable part of the process. No one was excluded from the dialogue. This process created an priceless asset for the organization: TRUST © Vanderbilt Center for Better Health 2009

20.  The MidSouth eHealth Alliance has a relationship with Participants  The Participants/Providers have a relationship with the patient  Data ownership is maintained by the publisher  It is irrelevant where data is stored  The publisher is responsible for the data quality and integrity  Use limitations must be defined and understood  Any Participant with the appropriate notice can “leave with their data”  All Participants have a voice in setting the policy  The MSeHA Board represents the collective healthcare community  The Operations Committee (a committee of the Board) represents the Participants  All new Participants are vetted and recommended by the Operations Committee  All policy is vetted and recommended by the Operations Committee © Vanderbilt Center for Better Health 2009

21. 21 Participants in the MidSouth eHealth Alliance -  Allow the use of the data for purpose of diagnosis, treatment and coordination of care in the provider setting  Apply for membership and sign a data sharing agreement  Determine what data will be shared (or not shared) and disclose this to all Participants  Are responsible for authorizing users  Coordinate and respond to a patient’s request for information about who has viewed their health care data within the Participant’s setting and through the MidSouth eHealth Alliance Patients -  Are notified through the Notice of Privacy Practices or an acceptable alternative that their data will be shared through the MidSouth eHealth Alliance  Have the right not to share their data ◦ It is assumed a patient will share until the patient requests otherwise © Vanderbilt Center for Better Health 2009

22. Delivering a means by which traditional unaligned organizations can present personal health information as if it were all coming from care delivery site

23. Vision for Connecting the Community Integration Platform Hospital Ambulatory Clinic SNF Urgent Care Clinic Hospital Physician Office Affiliated Lab Aggregation Communication Work Flow Each Participant has control of their own data Data Vault Data Vault Data Vault Data Vault Data Vault Data Vault Data Vault Electronic Patient Record

24.  20+ data feeds in varying formats are submitted real time or batch (all hospital data and some ambulatory data is real time; batch is every 24 hours) ◦ HL7 v 2.1 – 2.3 ◦ XML code ◦ Flat files ◦ Multiple lab systems with differing specs  Look for opportunities to use what already exists ◦ If a site already has an interface written – we use the same interface  Don’t make money a barrier – keep the costs low ◦ Estimated cost is $35,000 per health system for the first year (in sweat equity) ◦ Costs/efforts decrease significantly in the following years  Don’t let perfection be the enemy of moving forward  Think evolution not revolution

25.  All data represented from IP, OP, and ED encounters ◦ Patient identification/demographics ◦ Lab results ◦ Encounter data: date of service, physician and reason for visit ◦ 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) ◦ And we continue to build and add data... © Vanderbilt Center for Better Health 2009

26. Multiple sites in one view Normalized labs across sites

27. Requires systems thinking

28.  Benefits being realized today ◦ Reduced ED LOS ◦ Avoidance of duplicate tests (e.g. CT scans, MRIs, labs) ◦ Workflow efficiency ◦ Reduced need for 23 hour observation  Other Targeted Benefits ◦ Increased medical home referrals ◦ Increased quality of care and patient satisfaction ◦ Information exchange for public health purposes  Bio-surveillance  Public health reporting ◦ Basis for supporting pay for performance using clinical information  Broader Benefits of HIE ◦ Better care for patients through a community wide view of the patients’ care over time across organizations ◦ Possible disaster recovery solution

29.  2207 unique individuals seen in the Regional Medical Center’s ED in August 2008 ◦ 239 (11%) received follow up care at the Health Loop clinics ◦ 447 (20%) received care at Christ Community clinics ◦ Peak visits occurred between 3 weeks and 6 weeks post ED visit  Approach allows near real time tracking of all registration events across participants in the exchange independent of payer or site of care

30.  Cost to participants has been less than $50,000 per hospital over the past 4 year (time and effort)  Overall annual operating cost including technology is under $3 million ◦ For a population of 1 million that is $3 per person per year

31.  What can appear remarkably simple is very complex ◦ Incentives are misaligned (e.g. for a commercially insured patient not doing a test is a loss to the provider) ◦ Even on “simple” issues like eligibility and ePrescribing, complexity can cripple opportunities for innovation ◦ Health plans are pursuing multiple opportunities and approaches to Pay for Performance  American Recovery and Reinvestment Act (a.k.a. Stimulus Bill) ◦ Many areas are still to be defined ◦ Opportunity for funding for health information exchange, HIT adoption and HIT Regional Exchange Centers ◦ What is known, states and regions need to have their “act together”  If we are honest nothing about the American healthcare system is currently sustainable…but the horse is out of the barn and change is happening.

32.  Focus on quantifying the benefits  Understand to whom the benefits are accrued  In the context of its own strategic goals, identify grant funds to support efforts ◦ This is looked at as “seed funding” and requires a plan for what happens after the grant ends  Working with the state and across the state to support the state’s broader goals for HIT and HIE

33. © Vanderbilt Center for Better Health 2009