Practical Challenges in Health Information Exchange Are Patient-Managed Records the Future?

1. Practical Challenges in Health Information ExchangeAre Patient-Managed Records the Future? Presentation to the 37o Congreso Argentino de Pediatria Joseph H Schneider, MD Chief Health Information Officer Indiana University Health AAP Council of Clinical Information Technology and Child Health Informatics Center October 1,2015

2. Hola y Gracias

3. My First Day in Argentina

4. Our Objectives – What We Will Cover Today • The interoperability vision • HIEs, DIRECT and other interoperability attempts including FHIR • The raw reality of interoperability problems that technology alone can’t solve • Recommendations to help make patients responsible for their own information and to be the source of truth

5. The Interoperability/HIE Vision Lower costs & highest quality care through having all your information at the practitioner’s fingertips !!

6. Making the HIE Vision Work • Formerly Healtheway, Nationwide Health Information Network and other names before this • A "network of networks” model • Public/private coalition • Four types of organizations can participate: • EHRs users • Health information exchanges (HIEs) • Others such as public health, research, quality • Personal health record/consumer apps organizations • Many accomplishments to date but enormous amounts yet to do – not clear how successful it will be

7. Making the HIE Vision Work • Allows “push” communication between trusted participants, e.g., primary care to specialist • A special form of secure e-mail • Challenges: • no nationwide directory of recipients • lots of different approaches by organizations (post office versus direct delivery) • Much like the EMR inbox problem, the named receiver is not always the person who should be getting the message and sometimes is not available

8. Making the HIE Vision Work • Non-profit vendor association • Will certify products that support standards/policies • Initial efforts: • Patient Linking/Matching so EHRs won’t have to handle matching of 1 billion+ individual records. • Patient Access and Consent Management - Foster a patient-controlled means to simplify consent management • Record Locator Service and Directed Query - Match locations of a patient’s previous encounters • Now interested in FHIR • Exclusion of Epic is a problem

9. Making the HIE Vision Work: Is One EMR The Answer? • Unlikely to be one EMR anytime soon • Epic’s “Care Everywhere” is great for Epic customers, but Epic isn’t everywhere • Each installation is unique • Uses a federated model not available to other EMRs • Not all Epic sites are in Epic’s HIE • VA has a single database with >25% of population but VistA is not gaining market share

10. Making the HIE Vision Work: Is HL-7’s the Answer? • FHIR: Fast Healthcare Interoperability Resources • Goal: Replace CCDA with easy-to-implement internet-based open messaging and documents standards • Works by exposing discrete data as “services” for retrieval • E.g., demographics, admissions, diagnostic reports, allergies, and medications can each be retrieved and manipulated via their own resource URLs  • Much easier to implement than standard HL7

12. The Interoperability Reality:Increasingly Complex Structures A major interoperability assumption is that by combining the records of a patient you get to the truth. Unfortunately this is not always true

13. The Interoperability Reality:HIEs May Not Be The Answer Black Book (2015): 94% of America’s providers, health care agencies, patients and payers [are] meaningfully unconnected

14. Where Is the Patient In All This Technology?

15. The Reality:What Patient Disclosures Should Say • We will take care of your data but there is a good chance: • Your data from different doctors may be conflicting • Your data may be too overwhelming for your doctor to use • Your consents may be conflicting or impossible to follow • Your data may be mixed with someone else’s or we won’t be able to match you with your data • Your data may be lost or stolen • Your data may be destroyed sooner than you want • Your doctor may not participate in an HIE because of liability concerns • But trust us anyway and sign here …

16. Your Data May Be Conflicting:The Allergy Conundrum • Patient tells Boston physician they have an allergy; recorded in their EMR • Patient moves to Dallas; new physician conclusively determines no allergies and records this in their EMR • Patient is in Denver ED; HIE from Boston and Dallas show patient is both allergic and non-allergic • Conflicts can exists for other patient-level data, e.g., name changes, addresses, gender, even immunizations • Getting physicians to “fix” their EMRs for “incorrect” info is not a viable solution, particular in one-time visits

17. Your Data May Be Overwhelming:The Problem List Paradox • Baby with murmur; hospitalist adds “undiagnosed murmur” (785.2) in hospital EMR; data sent to HIE • Pediatrician adds more specific problem(VSD; 745.4) in office EMR; data sent to HIE • VSD Repaired: (ICD 35.53) entered by surgeon in yet another EMR; data sent to HIE • Quickly there are three entries in the HIE because no one manages the patient’s problem list across multiple EMRs

18. Your Consents May Be Conflicting • Patients can “Opt-In” & “Opt-Out” of two HIEs at the same time. • Which prevails? • How does the physician know data is missing? • Patients can restrict data by paying cash, but another physician may release it in a separate encounter if the patient doesn’t remember to block it each time • States have different rules for “sensitive data” e.g. in Texas clinicians have a right to see a patient’s HIV status whereas in other states they do not • Adolescent privacy (e.g., birth control) is difficult in an HIE environment without blocking all data

19. Your Data May Be Lost or Stolen At some point, patients will start to say “Give me my data and I’ll keep it secure”

20. Your Data May Be Discarded • HIEs often not subject to record retention laws so data destruction can happen after 2-3 years versus 7-25 years • Physicians and patients need data years later • Physicians need support for court cases years later …“Here’s what the system showed me…” • Patients who need to transfer data must revert back to the old method of asking their doctor to send it

21. Maybe It’s Time For A New Approach

22. Let Patients Manage Their Own Data? • Let’s build tools and incentives supporting: • A single repository for all of a patient’s data • Getting data easily to patients after each encounter • Allowing patients to manage their own data including managing inconsistencies, etc. • Sending appropriate data to the next care site • Having appropriate data available in emergencies • Physicians in use of this data as a primary source • In brief, let’s make give patients the ability to be responsible for their data and the tools for physicians to trust patients once again

23. Wait – Isn’t NATE Already Doing This? The National Association for Trusted Exchange (NATE) partners are using PHRs with DIRECT, but we need to augment their work greatly – Here’s some recommendations:

24. Incentivize Each Person To Have A Single Portable Data Repository • Example: Incentivize payers, employers and schools to provide each individual with a single portable portal/PHR that they would use to hook to EMRs to collect and transmit their data and do portal functions (e.g. schedule appointments) • Incentivize active use of this tool by the insured/employee as a condition of insurance or employer benefits

25. Give Patients Their Data Easily • Example: Put the Blue Button in all EMRs and teach it to seniors, students, workers… http://tinyurl.com/bluebuttonvideo

26. Give Patients Their Data Easily • Could one solution be to let patients play with ? • This would allow retrieval of information that they need such as vaccinations, medication lists, etc.

27. Help Patients Understand their Data

28. Help Patients Manage Their Data • Allow patients to: • add, modify, delete and prioritize data • notify medical homes of these changes • make these changes evident to physicians • Provide care coordination support for those who cannot manage their own Portal/PHR through insurers, churches, and others

29. Support Patients Sending Appropriate Data to the Next Point of Care • Incentivize new ways to get PHR info to physicians (DIRECT from patients or ) • Support professional societies in defining: • Data needed for visit types • Metadata to support filtered sending of data • Incentivize Portals/PHRs have easy-to-use ways for patients to choose and send filtered data that matches professional requirements and patient privacy needs

30. Support Physicians Using Patient Data • Incentivize EMRs to have “delta” functions that compare patient-submitted content to the EMR and provide functions to easily add/subtract data • Incentivize medical schools and professional organizations to teach how PHRs can be a primary source of information about patients • Incentivize EMRs to capture a “snapshot” of the data the patient sent for liability protections • Provide standards for tracking all data sources and changes (“provenance”)

31. Real Life: Our Portal/PHR In North Texas • Patients have a consolidated PHR for two EMRs • They can add, delete, and change problems, medications, allergies and immunizations • Primary care physicians are notified of these changes and may elect to make the changes in the primary care EMR • Specialists are NOT notified of changes at this time out of concern of overwhelming them

32. Real Life: Our Portal/PHR: What Have We Learned? • “Morbid Obesity” is by far the most deleted problem • Allergies are frequently updated by patients (both additions and deletions) • Over 1,000 clinical changes per month are coming in from patients on a base of 100,000 patient accounts • We are still investigating how patients react to this, but early indications are that they are pleased to have control over their information

33. Obvious Questions That I Can Answer • How can we trust patients not to mess up their data? • What about my 93 year old grandmother who never has touched a computer? • What about someone who doesn’t have a computer? • What about adolescents? • How will a person know which allergy is correct? • Can a doctor see what a patient has changed? • How will we gather data for research and quality?

34. Adios, Gracias y Preguntas Joseph H Schneider, MD drjoes1tx@gmail.com Indiana University Health Indianapolis, Indiana American Academy of Pediatrics Council on Clinical Information Technology (COCIT) Child Health Informatics Center (CHIC)Elk Grove Village, Illinois