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Health Information Exchange:    Medical Research Rethought           Jonathan Gold, MD MHA MSc                Regional Chi...
Conflict of Interest Disclosure                             Jonathan Gold, MDHas no real or apparent conflicts of interest...
Who is Antoine de Saint-Exupery?
If you want to build a ship, dont drum uppeople to collect wood and dont assignthem tasks and work, but rather teachthem t...
Abstract Health information exchange: shared access patients’ medical data HIE secondary use of data    Query across mu...
Janet Roseburg                                            86 y.o. female                                                 ...
As doctors, after we diagnose, howdo we decide what to do? Need to consider the  patient’s background Need information a...
Medical Research and Literature       “Gold Standard”     Peer reviewed     Placebo controlled     Double blind     St...
Statistically SignificantLarge enough test and control groups have been used to  indicate that the result is unlikely to h...
Medical literature: Clinical Trials Define specific focus of study: one factor or small set Compensate for “confounding ...
Does statistical significance translate intoguidance for the treatment of Mrs. Roseburg?  Many factors affect how a patie...
This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may b...
PubMed Search Criteria Journal: New                 England Journal of Medicine Dates: 1/1/2006-12/31/2006 Study Popula...
NEJM Research Articles                                                        Study Population Sizes                      ...
What is unique about             Mrs. Roseburg? Personal and demographic characteristics Diseases Medications Genetic ...
Choose the appropriate treatment:                             Drug A vs. Drug B  Considerations    Four chronic diagnose...
This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may b...
JR’s profile Database of 100,000,000 unique    patient files   10 key variables from JR’s profile found    in 200,000 pa...
JR’s profile + Query Drug A +Screening BatteryDrug A has an increased risk of stroke within two years in 0.7% of cases    ...
JR’s profile + Query Drug B +Screening BatteryDrug B has an increased risk of stroke within two years in 0.02% of cases   ...
What do you recommend?If Drug A is chosen to treat Janet Roseburg (rather than   Drug B), there will be a 35 times higher ...
Secondary Use of Aggregated Data  With a larger pool of potential participants, smaller   studies might be less important...
This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may b...
This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may b...
The Wunderlich Project           http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpubl...
http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprieta...
http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprieta...
http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprieta...
http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprieta...
http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprieta...
Points to Remember:                                          Wunderlich Used local database with large number of cases I...
Frankovich J, Longhurst CA, Sutherland SM. Evidence-based medicine in the EMR era. N Engl J Med.2011 Nov 10;365(19):1758-9...
Background 13 year old girl Systemic Lupus  Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid  Antibodi...
As doctors, how do we decide? Need to consider the patient’s  background Need more information about  risks vs. benefits...
Results   This document contains unpublished, confidential and proprietary information. No disclosure or use of these   ma...
What did the local historical data teach them?  Overall 98 pediatric patients with lupus, 10 of them   developed thrombos...
What did they do? 4 hours to search local  database Treated with anticoagulation  within 24 hours after  admission      ...
Points to Remember: Evidence-Based Medicine in the EMR Era Used local database with large number of cases Investigated e...
This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may b...
Health Information Mandates 2004: Office for National Coordinator for Health  Information Technology 2009: American Reco...
Health Information Exchanges Large healthcare organizations Regions / States Digital, standardized health data in netwo...
Brave New World:Secondary Use Enablers Electronic records in outpatient and acute care settings Huge, detailed patient d...
This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may b...
In Search of Mrs. Roseburg Query enormous health information database Search engine magic Find doppelgangers Compare r...
Focused Inquiry Challenges Cyber security / patient information de-identification Patients opt in to share data Access ...
Addressing Challenges Privacy secured by using positive /negative query statistics    Results only shared if positive re...
Mrs. Roseburg RevisitedMrs. Roseburg, the former school teacher, will   always want me to present information to her   tha...
George Bernard Shaw
References Wunderlich Project. http://fad.enh.org/wunderlich/default.aspx  accessed 7/3/2012 Frankovich J, Longhurst CA,...
 iHT2 Health IT Summit in Denver 2012 – Presentation "Health Information Exchange: Medical Research Rethought"
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iHT2 Health IT Summit in Denver 2012 – Presentation "Health Information Exchange: Medical Research Rethought"

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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.

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iHT2 Health IT Summit in Denver 2012 – Presentation "Health Information Exchange: Medical Research Rethought"

  1. 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. 2. Conflict of Interest Disclosure Jonathan Gold, MDHas 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. 3. Who is Antoine de Saint-Exupery?
  4. 4. If you want to build a ship, dont drum uppeople to collect wood and dont assignthem tasks and work, but rather teachthem to long for the endless immensity ofthe sea. Antoine de Saint-Exupery
  5. 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.
  6. 6. 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.
  7. 7. As doctors, after we diagnose, howdo 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.
  8. 8. 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.
  9. 9. Statistically SignificantLarge 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.
  10. 10. 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.
  11. 11. Does statistical significance translate intoguidance 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.
  12. 12. This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  13. 13. 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.
  14. 14. 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=326Search 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.
  15. 15. 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.
  16. 16. 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.
  17. 17. This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  18. 18. 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.
  19. 19. JR’s profile + Query Drug A +Screening BatteryDrug 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.
  20. 20. JR’s profile + Query Drug B +Screening BatteryDrug 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.
  21. 21. 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.
  22. 22. 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.
  23. 23. This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  24. 24. This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  25. 25. The Wunderlich Project http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  26. 26. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  27. 27. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  28. 28. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  29. 29. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  30. 30. http://fad.enh.org/wunderlich/default.aspx accessed 7/3/2012This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  31. 31. 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.
  32. 32. 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.
  33. 33. Background 13 year old girl Systemic Lupus Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid Antibodies PancreatitisIncreased 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.
  34. 34. 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.
  35. 35. 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.
  36. 36. 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.
  37. 37. What did they do? 4 hours to search local database Treated with anticoagulation within 24 hours after admission Results?  No thrombosisFrankovich 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. 38. 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.
  39. 39. This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  40. 40. 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.
  41. 41. 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.
  42. 42. 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.
  43. 43. This document contains unpublished, confidential and proprietary information. No disclosure or use of thesematerials may be made without the express written consent of Jonathan Gold.
  44. 44. 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.
  45. 45. 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.
  46. 46. 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.
  47. 47. Mrs. Roseburg RevisitedMrs. 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.
  48. 48. George Bernard Shaw
  49. 49. 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.

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