The spread of electronic health records throughout the healthcare spectrum, standardization of health data elements, HITECH and ARRA incentives all support the sharing of patient clinical information through Health Information Exchanges. By utilizing powerful and intuitive search engines like Google, Bing and Watson, how a clinician investigates information for a specific patient will dramatically change. Secondary use of clinical information from huge databases of health data will allow patients to receive customized treatment based on their specific characteristics, diseases, medications, genetic sequences, socioeconomic backgrounds and additional factors.

1. Health Information Exchange:
Medical Research Rethought
Jonathan Gold, MD MHA MSc
Regional Chief Medical Informatics Officer
Catholic Health Initiatives
drjgold@yahoo.com
iHT2 Health IT Summit
7/25/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

2. Conflict of Interest Disclosure
Jonathan Gold, MD
Has no real or apparent conflicts of interest
to this presentation.
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

3. Who is Antoine de Saint-Exupery?

4. If you want to build a ship, don't drum up
people to collect wood and don't assign
them tasks and work, but rather teach
them to long for the endless immensity of
the sea.
Antoine de Saint-Exupery

5. Abstract
 Health information exchange: shared access patients’ medical data
 HIE secondary use of data
 Query across multiple HIE databases
 Matching multiple characteristics enables patient-specific decision support
 Customized patient care; Medical decisions tailored to individual
 Medical research will transition from searching studies focused on
limited number of patient attributes to patient-specific research
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

7. Janet Roseburg  86 y.o. female
 Arthritis (acute exacerbation)
 Diabetes
 Congestive Heart Failure
 Hypertension
Compare two similar anti-
inflammatory treatments—
Drug A vs. Drug B
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

8. As doctors, after we diagnose, how
do we decide what to do?
 Need to consider the
patient’s background
 Need information about
risks vs. benefits  Medical education
 Personal experience
 Peers
 Medical literature
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

9. Medical Research and Literature
“Gold Standard”
 Peer reviewed
 Placebo controlled
 Double blind
 Statistically significant
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

10. Statistically Significant
Large enough test and control groups have been used to
indicate that the result is unlikely to have occurred by
chance.
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

11. Medical literature: Clinical Trials
 Define specific focus of study: one factor or small set
 Compensate for “confounding factors”
________________
 Concurrent diseases
________________
 Other medications
______________
 Socioeconomics
 Do “confounders” matter?
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

12. Does statistical significance translate into
guidance for the treatment of Mrs. Roseburg?
 Many factors affect how a patient progresses after receiving
treatment
 Does this lead to rational clinical decision making? Yes
 Does that research provide the optimal means for tailoring
treatment to that patient? (Invariably, …) No
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

13. This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

14. PubMed Search Criteria
 Journal: New England Journal of Medicine
 Dates: 1/1/2006-12/31/2006
 Study Populations: Humans, All Ages, Both Sexes
 Types of Articles:
 Clinical Trials • Controlled Clinical Trial
 Meta-Analysis • Evaluation Studies
 Randomized Control Trials • Multicenter Study
 Case Reports • Twin Study
 Clinical Trial (Phase 1-4) • Validation Study
 Comparative Study
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

15. NEJM Research Articles
Study Population Sizes
1/1/2006-12/31/2006
>1000
13%
500-1000 41
7%
1-149
24 150-499
500-1000
>1000
150-499
38
12%
223
1-149
68%
N=326
Search term s: Meta-Analysis, Randomized Control Trials, Case Reports, Clinical Trials (Phase 1-4), Comparative Study, Controlled Clinical Trial, Evaluation Studies,
Multicenter Study, Tw in Study, Validation Study. (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed.)
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

16. What is unique about
Mrs. Roseburg?
 Personal and demographic characteristics
 Diseases
 Medications
 Genetic sequence
 Socioeconomic background
 Additional factors
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

17. Choose the appropriate treatment:
Drug A vs. Drug B
 Considerations
 Four chronic diagnoses
 12 current medications
 Renal function
 Hepatic function
 Age (and Gender)
 Weight
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

18. This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

19. JR’s profile
 Database of 100,000,000 unique
patient files
 10 key variables from JR’s profile found
in 200,000 patients
 20 key variables from JR’s profile
found in 1000 patients
 20 variables and Drug A = 400
patients
 20 variables and Drug B = 100 patients
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

20. JR’s profile + Query Drug A +
Screening Battery
Drug A has an increased risk of stroke within two years
in 0.7% of cases
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

21. JR’s profile + Query Drug B +
Screening Battery
Drug B has an increased risk of stroke within two years
in 0.02% of cases
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

22. What do you recommend?
If Drug A is chosen to treat Janet Roseburg (rather than
Drug B), there will be a 35 times higher risk for her to
have a stroke within two years than if she is treated
with Drug B.
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

23. Secondary Use of Aggregated Data
 With a larger pool of potential participants, smaller
studies might be less important
 Real world experience may validate or temper findings
from tightly controlled double blind studies
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

24. This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

25. This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

26. The Wunderlich Project
http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

27. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

28. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

29. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

30. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

31. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

32. Points to Remember:
Wunderlich
 Used local database with large number of cases
 Investigated effects of multiple factors
 Shared with clinicians
 Supported clinical decision making at point of care
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

33. Frankovich J, Longhurst CA, Sutherland SM. Evidence-based medicine in the EMR era. N Engl J Med.
2011 Nov 10;365(19):1758-9. Epub 2011 Nov 2. http://www.nejm.org/doi/full/10.1056/NEJMp1108726
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

34. Background
 13 year old girl
 Systemic Lupus
Erythematosus (SLE)
 Nephrotic range proteinuria
 Antiphospholipid
Antibodies
 Pancreatitis
Increased risk of thrombosis?
Treat with anticoagulants???
Frankovich J, Longhurst CA, Sutherland SM. Evidence-based medicine in the EMR era. N Engl J Med.
2011 Nov 10;365(19):1758-9. Epub 2011 Nov 2. http://www.nejm.org/doi/full/10.1056/NEJMp1108726
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

35. As doctors, how do we decide?
 Need to consider the patient’s
background
 Need more information about
risks vs. benefits  Medical education
 Personal experience
 Peers
 Medical literature
 Historical database of patient
records
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

36. Results
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

37. What did the local historical data teach them?
 Overall 98 pediatric patients with lupus, 10 of them
developed thrombosis
 15x: Relative risk of thrombosis with lupus and
persistent proteinuria versus lupus without
proteinuria.
 12x: Relative risk of thrombosis with lupus and
pancreatitis versus lupus without pancreatitis.
Frankovich J, Longhurst CA, Sutherland SM. Evidence-based medicine in the EMR era. N Engl J Med.
2011 Nov 10;365(19):1758-9. Epub 2011 Nov 2. http://www.nejm.org/doi/full/10.1056/NEJMp1108726
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

38. What did they do?
 4 hours to search local
database
 Treated with anticoagulation
within 24 hours after
admission
Results?
 No thrombosis
Frankovich J, Longhurst CA, Sutherland SM. Evidence-based medicine in the EMR era. N Engl J Med.
2011 Nov 10;365(19):1758-9. Epub 2011 Nov 2. http://www.nejm.org/doi/full/10.1056/NEJMp1108726
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

39. Points to Remember:
Evidence-Based Medicine in the EMR Era
 Used local database with large number of cases
 Investigated effects of multiple factors
 Shared with clinicians
 Supported clinical decision making at point of care
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

40. This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

41. Health Information Mandates
 2004: Office for National Coordinator for Health
Information Technology
 2009: American Recovery and Reinvestment Act
 Health Information Technology for Economic and
Clinical Health (HITECH) Act
 2011: Accountable Care Organization guidelines
(DHHS)
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

42. Health Information Exchanges
 Large healthcare organizations
 Regions / States
 Digital, standardized health data in network servers
 Nationwide Health Information Network (NwHIN)
 Allow providers to communicate patient data securely
 May serve as conduit between HIEs
 Allow providers to access patient records
 Permit patients to access personal health records
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

43. Brave New World:
Secondary Use Enablers
 Electronic records in outpatient and acute care settings
 Huge, detailed patient databases
 Standard medical terminologies
 Temporospatial descriptors
 Highly capable search engines
 Google
 Bing
 Watson
 High speed communications (Internet) infrastructure
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

44. This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

45. In Search of Mrs. Roseburg
 Query enormous health information database
 Search engine magic
 Find doppelgangers
 Compare real world experience of very similar patients
 Validate / temper interpretation of results from tightly
controlled double blind studies
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

46. Focused Inquiry Challenges
 Cyber security / patient information de-identification
 Patients opt in to share data
 Access to deceased patient data
 Constructing accurate patient profile and specific question
 Sort clinical data in temporospatial context
 Rapid search to be clinically useful
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

47. Addressing Challenges
 Privacy secured by using positive /negative query statistics
 Results only shared if positive responses greater than pre-defined,
mandated limit (e.g., if n<50, no result shared)
 Protect de-identification of patients by not allowing query to be
overly specific
 Constructing effectual query requires physician to identify
right question and convey a reasonable summary
 How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

48. Mrs. Roseburg Revisited
Mrs. Roseburg, the former school teacher, will
always want me to present information to her
that is as accurate as possible and explain why
I have prescribed Drug B rather than Drug A
for her rheumatoid arthritis. (Her neighbor
received Drug A from me two months ago and
has done well using it.)
The shift in how we search for guidance when
making treatment and other
recommendations to our patients, from
focusing on published medical research about
a very limited set of attributes which my
patient has in common with participants in a
study to tailoring a query around a robust
description about that patient, shall lead us to
a wholly new understanding of how unique we
each are.
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.

49. George Bernard Shaw

50. References
 Wunderlich Project. http://fad.enh.org/wunderlich/default.aspx
accessed 7/3/2012
 Frankovich J, Longhurst CA, Sutherland SM. Evidence-based
medicine in the EMR era. N Engl J Med. 2011 Nov 10; 365(19):1758-9.
Epub 2011 Nov 2. http://www.nejm.org/doi/full/10.1056/NEJMp1108726
accessed 7/3/2012
 Gold JD, Ball MJ. The Health Record Banking Imperative: A
conceptual model. IBM Systems Journal. Vol 46, No 1, 43-55. 2007
http://www.accessmyhealth.org/documents/HRB%20Conceptual%20
Model.pdf accessed 7/3/2012
 Gold JD. Medical Researcher, Meet Mrs. Roseburg. JHIM.
Forthcoming 2012.
This document contains unpublished, confidential and proprietary information. No disclosure or use of these
materials may be made without the express written consent of Jonathan Gold.