11

Give me interoperability --- Give me interoperability --- or give me death!or give me death!

Based on a true storyBased on a true story

Saul Rosenberg, Ph.D.Saul Rosenberg, Ph.D.

January 8, 2008January 8, 2008

22

Collaborating on Mental Health Collaborating on Mental Health Information Exchange (Information Exchange (Mental Mental HIE)HIE)

Saul Rosenberg, Ph.D.Saul Rosenberg, Ph.D.

Assoc. Clinical Prof. of Medical PsychologyAssoc. Clinical Prof. of Medical PsychologyUniv. of California, San Francisco (UCSF)Univ. of California, San Francisco (UCSF)

President, Neuron Valley Networks Inc. President, Neuron Valley Networks Inc.

Tel: 415-925-3086 Tel: 415-925-3086

Email: saul@rosenbergphd.com Email: saul@rosenbergphd.com

33

A Mystery -and a Tragedy --A Mystery -and a Tragedy --in III Partsin III Parts

(I.) A True Story(I.) A True Story

(II.)(II.) Who, What, Where, Why & When?Who, What, Where, Why & When?

(III.)(III.) Challenges and Barriers toChallenges and Barriers to Mental Mental HIEHIE

44

(I.) A True Storey(I.) A True Storey

NEW YORK TIMES March 30, 2007NEW YORK TIMES March 30, 2007

Disuse of System Is Cited in Gaps in Disuse of System Is Cited in Gaps in Soldiers’ CareSoldiers’ Care WASHINGTON — Lapses in using a WASHINGTON — Lapses in using a digital medical record system for tracking digital medical record system for tracking wounded soldiers have led to medical wounded soldiers have led to medical mistakes and delays in care, and have kept mistakes and delays in care, and have kept thousands of injured troops from getting thousands of injured troops from getting benefits.benefits.

55

Story continuedStory continued

Several department officials said the Several department officials said the problem may have played a role in the problem may have played a role in the suicide of a soldier last year… After being suicide of a soldier last year… After being evacuated to a military hospital in evacuated to a military hospital in Germany, the soldier received Germany, the soldier received psychological treatment and his condition psychological treatment and his condition was noted in the digital records system was noted in the digital records system

66

Story continuedStory continued

……he was sent to Madigan Hospital at Fort he was sent to Madigan Hospital at Fort Lewis but was not admitted…[a few days Lewis but was not admitted…[a few days later] he killed himself. Defense records later] he killed himself. Defense records indicated that doctors at Fort Lewis did indicated that doctors at Fort Lewis did not check the soldier’s file in the digital not check the soldier’s file in the digital system, where his suicidal tendencies system, where his suicidal tendencies were described, until a day after his death. were described, until a day after his death.

77

Story continuedStory continued

““The DoD’s failure to share data and track The DoD’s failure to share data and track patient records is truly patient records is truly a matter of life and a matter of life and deathdeath,” Senator Patty Murray, Democrat ,” Senator Patty Murray, Democrat of Washington, said in a statement. “This of Washington, said in a statement. “This isn’t an isolated case, but a system-wide isn’t an isolated case, but a system-wide failure.” failure.”

88

The Mystery: Why Doesn’t the The Mystery: Why Doesn’t the System Work as Intended? System Work as Intended?

The system was designed to make The system was designed to make seamless the transition of soldiers who seamless the transition of soldiers who were wounded in Iraq and Afghanistan as were wounded in Iraq and Afghanistan as they moved to hospitals stateside. But they moved to hospitals stateside. But only 13 of 70 military treatment centers in only 13 of 70 military treatment centers in the United States use it even though it was the United States use it even though it was mandated by the Pentagon more than two mandated by the Pentagon more than two years ago, according to agency years ago, according to agency documents.documents.

99

The TragedyThe Tragedy

As a result, military doctors say they are As a result, military doctors say they are less able to learn from mistakes since they less able to learn from mistakes since they cannot track the progress of wounded cannot track the progress of wounded soldiers from one location to another. soldiers from one location to another. Others complain of costly and redundant Others complain of costly and redundant testing.testing.

1010

The Moral of the StoryThe Moral of the Story

Give me interoperability -- or Give me interoperability -- or

give me death!give me death!

1111

(II.) Who, What, Where, Why (II.) Who, What, Where, Why and When?and When?

Sharing Mental Health Information Sharing Mental Health Information ((Mental Mental HI) HI)

Who needs to share Who needs to share MentalMental HI?? HI?? What What Mental Mental HI needs to be shared?HI needs to be shared? Where does Where does MentalMental HI need to be shared? HI need to be shared? Why does Why does MentalMental HI need to be shared? HI need to be shared? When does When does Mental Mental HI need to be shared?HI need to be shared?

1212

Who Needs Who Needs MentalMental HIE? HIE?

The Federal Government The Federal Government Military Health System (MHS)Military Health System (MHS) Veterans’ Health Administration (VA)Veterans’ Health Administration (VA) Veterans’ Benefit Administration (VBA) Veterans’ Benefit Administration (VBA) Social Security Administration (SSA)Social Security Administration (SSA) Medicare/Medicaid (CMS)Medicare/Medicaid (CMS) Homeland security, FBI, CIA, DoJHomeland security, FBI, CIA, DoJ NIH, IOM, CDCNIH, IOM, CDC NHIN, ONCNHIN, ONC

1313

Who Needs Who Needs Mental Mental HIE?HIE?

State Governments State Governments Juvenile detentionJuvenile detention Mental hospitalsMental hospitals Correctional facilities, prisons Correctional facilities, prisons Nursing homesNursing homes

1414

Who Needs Who Needs Mental Mental HIE?HIE?

Regional & Local Govt. & OrganizationsRegional & Local Govt. & Organizations Emergency Depts (ED) Emergency Depts (ED) County trauma centers County trauma centers HMOs, PPOsHMOs, PPOs Academic Medical CentersAcademic Medical Centers Community providers – 99% have Community providers – 99% have

handwritten notes in paper charts.handwritten notes in paper charts.

1515

What What MentalMental HI Needs to be HI Needs to be Shared?Shared?

– Cognitive, emotional and social Cognitive, emotional and social functioning and impairmentfunctioning and impairment

– Alcohol and substance use and abuseAlcohol and substance use and abuse

– Traumatic psychological reactions: Traumatic psychological reactions: PTSD, depression, anxiety disordersPTSD, depression, anxiety disorders

– Violence risk assessmentsViolence risk assessments

– Suicide risk assessment Suicide risk assessment

1616

Where, Why and When does Where, Why and When does Mental Mental HI need to be shared?HI need to be shared?

Where?Where?– The InternetThe Internet– Internet 2Internet 2– HealthGrid, BIRNHealthGrid, BIRN

Why?Why?– Continuity of careContinuity of care– EpidemiologyEpidemiology– Basic, clinical and translational researchBasic, clinical and translational research

When?When?– At the point of careAt the point of care

1717

(III.) Challenges and Barriers to (III.) Challenges and Barriers to Mental Mental HIEHIE

The lack of: The lack of: Terminologies, controlled vocabularies Terminologies, controlled vocabularies

and ontologies for and ontologies for MentalMental HIE HIE MentalMental Health EHRs and PHRs Health EHRs and PHRs MentalMental Health Clinical Decision Support Health Clinical Decision Support

Systems Systems Mental Mental Health Clinical Data Repositories Health Clinical Data Repositories

and Data Warehousesand Data Warehouses

1818

Challenges and Barriers to Challenges and Barriers to Mental Mental HIEHIE

The conflict between privacy and The conflict between privacy and confidentiality of confidentiality of Mental Mental HI HI

-- and the need to share -- and the need to share Mental Mental HI between HI between providers, health care organizations and providers, health care organizations and others. others.

1919

Problem: Terminologies exist for Problem: Terminologies exist for MentalMental

Disorders –but not for symptomsDisorders –but not for symptoms

Diagnostic criteria and codes exist for Diagnostic criteria and codes exist for broad categories of mental disordersbroad categories of mental disorders

Diagnostic and Statistical Manual of the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-American Psychiatric Association (DSM-IV)IV)– Major Depressive Episode: at least 2 weeks during Major Depressive Episode: at least 2 weeks during

which there is either depressed mood or the loss of which there is either depressed mood or the loss of interest or pleasure in nearly all activities. interest or pleasure in nearly all activities.

– 296.2 Major Depressive Disorder, Single Episode296.2 Major Depressive Disorder, Single Episode

2020

No Terminologies Exist for No Terminologies Exist for Mental Mental SymptomsSymptoms

Terminologies, controlled vocabularies and Terminologies, controlled vocabularies and ontologies are ontologies are lackinglacking for for – cognitive functioning and impairmentcognitive functioning and impairment

– emotional functioning and distressemotional functioning and distress

– social functioning and deficitssocial functioning and deficits

– symptoms of mental disorderssymptoms of mental disorders

– mental and emotional disabilitymental and emotional disability

– suicidal risk, violence risk suicidal risk, violence risk

2121

No Diagnostic Codes for No Diagnostic Codes for Suicidal Thoughts, PlansSuicidal Thoughts, Plans

In the DSM-IV suicidal thoughts, In the DSM-IV suicidal thoughts, feelings, plans are not in the index!feelings, plans are not in the index!

In the DSM-IV there are no diagnostic In the DSM-IV there are no diagnostic codes for suicidal symptoms. codes for suicidal symptoms.

There is no machine readable standard There is no machine readable standard terminology for suicidal symptoms. terminology for suicidal symptoms.

2222

No Standard Terminologies in No Standard Terminologies in Use by ProvidersUse by Providers

Psychologists, psychiatrists, physicians, Psychologists, psychiatrists, physicians, social workers and counselors do not use social workers and counselors do not use any standard terminologies. any standard terminologies.

What criteria does Dr. A use for What criteria does Dr. A use for “depressed mood,” suicidal thoughts” or “depressed mood,” suicidal thoughts” or “suicidal plans”? Does Dr. B. use the “suicidal plans”? Does Dr. B. use the same criteria? No one knows. same criteria? No one knows.

2323

EHRs Not Adopted by EHRs Not Adopted by Community ProvidersCommunity Providers

For 95% of providers in the community, For 95% of providers in the community, mentalmental health records are: health records are:– hand written on paper hand written on paper

– undated and unsignedundated and unsigned

– based solely on clinical judgment based solely on clinical judgment

– not sharable without a signed consent form by not sharable without a signed consent form by the patientthe patient

2424

How Should the Data be How Should the Data be Exchanged?Exchanged?

Mental Mental HI has a higher level of protection HI has a higher level of protection and privacy than physical health dataand privacy than physical health data

HIPPAHIPPA Varying state statutesVarying state statutes Data may be relevant in civil or criminal Data may be relevant in civil or criminal

proceedingsproceedings

2525

VistA, The VA’s EHR is the VistA, The VA’s EHR is the Model Model

Epidemiological Study based on data Epidemiological Study based on data from VistA:  from VistA:   Of Of 103,788 OEF/OIF 103,788 OEF/OIF veteransveterans seen at VA health care facilities seen at VA health care facilities– 25% received a mental health diagnosis 25% received a mental health diagnosis

– 56% of whom had 2 or more distinct mental 56% of whom had 2 or more distinct mental health diagnoses. health diagnoses.

– Overall 31% received mental health and/or Overall 31% received mental health and/or psychosocial diagnoses. psychosocial diagnoses.

2626

Epidemiological Study from VA Epidemiological Study from VA EHRsEHRs

– Most initial mental health diagnoses (60%) were Most initial mental health diagnoses (60%) were made in primary care settings. made in primary care settings.

– The youngest group of OEF/OIF veterans (age, The youngest group of OEF/OIF veterans (age, 18-24 years) were at greatest risk for receiving 18-24 years) were at greatest risk for receiving mental health or posttraumatic stress disorder mental health or posttraumatic stress disorder diagnoses compared with veterans 40 years or diagnoses compared with veterans 40 years or older.older.

Lessons learnedLessons learned: : Prioritize psychological Prioritize psychological assessment of veterans 18-24 who are at the assessment of veterans 18-24 who are at the greatest risk.greatest risk.

2727

Needed: Psychological Needed: Psychological InformaticsInformatics

Psychological tests are as accurate in diagnosing Psychological tests are as accurate in diagnosing mental disorders as medical tests are in diagnosing mental disorders as medical tests are in diagnosing physical disorders. (Meyer et al).physical disorders. (Meyer et al).

ProblemProblem: psychological test data are stored in research : psychological test data are stored in research data silos.data silos.

ProblemProblem: There is no psychological informatics : There is no psychological informatics comparable to medical, biological or neurological comparable to medical, biological or neurological informatics.informatics.

ProblemProblem: Behavioral Health Informatics is only a : Behavioral Health Informatics is only a small part of what is needed and it is in its infancy – small part of what is needed and it is in its infancy – one small book on the subject. (Dewan et al). one small book on the subject. (Dewan et al).

2828

Collaboration needed between:Collaboration needed between:

The community of health IT professionals The community of health IT professionals The academic community, including health The academic community, including health

informatics graduate educationinformatics graduate education The community of mental health professionalsThe community of mental health professionals Patient advocacy organizationsPatient advocacy organizations Governmental regulatory and funding agencies Governmental regulatory and funding agencies The MHS, VHA, VBA, Tricare, TATRC, U.S. Army The MHS, VHA, VBA, Tricare, TATRC, U.S. Army

Medcom Quality Management Office Medcom Quality Management Office Creators of Evidence-Based Practice Guidelines Creators of Evidence-Based Practice Guidelines

2929

ReferencesReferences

American Psychiatric Association (1994) American Psychiatric Association (1994) Diagnostic and Statistical Manual of Diagnostic and Statistical Manual of Mental DisordersMental Disorders, 4, 4thth Edition. (DSM-IV) Edition. (DSM-IV) Washington, D.C: APA. 1994.Washington, D.C: APA. 1994.

Dewan, N.A.; Lorenzi, N.M.; Riley, R.T.; Dewan, N.A.; Lorenzi, N.M.; Riley, R.T.; Bhattacharya, S.R. (Eds.) (2002) Bhattacharya, S.R. (Eds.) (2002) Behavioral Healthcare InformaticsBehavioral Healthcare Informatics.. Springer Series: Health InformaticsSpringer Series: Health Informatics

3030

ReferencesReferences

Goldstein, D., Groen, P.J. Groen, Ponskhe, S, Goldstein, D., Groen, P.J. Groen, Ponskhe, S, Wine, M/ (2007). Wine, M/ (2007). Medical Informatics 20/20. Medical Informatics 20/20. Quality and Electronic Health Records Quality and Electronic Health Records through Collaboration, Open Solutions and through Collaboration, Open Solutions and InnovationInnovation.. Boston: Jones and Bartlett Pub.Boston: Jones and Bartlett Pub.

Koslow, S.H. & Huerta, M.F. (Eds).(2000) Koslow, S.H. & Huerta, M.F. (Eds).(2000) Electronic Collaboration in Science.Electronic Collaboration in Science. Lawrence Erlbaum Associates, Inc.Lawrence Erlbaum Associates, Inc.

3131

ReferencesReferences

Koslow, S.H. & Subramaniam, S. (2005). Koslow, S.H. & Subramaniam, S. (2005). Databasing the Brain: From Data to Databasing the Brain: From Data to Knowledge (Neuroinformatics).Knowledge (Neuroinformatics). John Wiley & John Wiley & Sons Inc.Sons Inc.

Meyer, G.J., Finn, S.e., Eyde, L.D et al. (2001). Meyer, G.J., Finn, S.e., Eyde, L.D et al. (2001). Psychological testing and psychological Psychological testing and psychological assessment: A Review of Evidence and assessment: A Review of Evidence and IssuesIssues.. American PsychologistAmerican Psychologist. . Vol 56, No. 2, Vol 56, No. 2, 128-165. 128-165.

3232

ReferencesReferences

Seal, K.H, Bertenthal, D, Miner, C.R., Sen,S & Marmar, Seal, K.H, Bertenthal, D, Miner, C.R., Sen,S & Marmar, C (2007). C (2007). Bringing the War Back Home: Mental Bringing the War Back Home: Mental Health Disorders Among 103,788 US Veterans Health Disorders Among 103,788 US Veterans Returning From Iraq and Afghanistan Seen at Returning From Iraq and Afghanistan Seen at Department of Veterans Affairs Facilities.Department of Veterans Affairs Facilities. Arch Arch Intern MedIntern Med. 167:476-482.. 167:476-482.

Shortliffe, E.H., Cimino, J.J.(Eds.) (2006) Shortliffe, E.H., Cimino, J.J.(Eds.) (2006) Biomedical Biomedical Informatics: Computer Applications in Health Care Informatics: Computer Applications in Health Care and Biomedicineand Biomedicine, 3, 3rdrd Ed. Ed. New York: SpringerNew York: Springer

3333

Web SitesWeb Sites

American Psychological Association: American Psychological Association: http://www.apa.org/http://www.apa.org/

American Psychiatric Association: American Psychiatric Association: http://www.psych.org/http://www.psych.org/

BioInformatics Research Network (BIRN): BioInformatics Research Network (BIRN): http://www.nbirn.net/http://www.nbirn.net/

Telemedicine and Advanced Technologies Research Telemedicine and Advanced Technologies Research Center (TATRC), a section of the USAMRMC Center (TATRC), a section of the USAMRMC

http://www.tatrc.org/http://www.tatrc.org/

3434

Web SitesWeb Sites

U.S. Army Medcom Quality Management U.S. Army Medcom Quality Management OfficeOffice

VA / DoD Clinical Practice Guidelines VA / DoD Clinical Practice Guidelines

https://www.qmo.amedd.army.mil/https://www.qmo.amedd.army.mil/pguide.htmpguide.htm