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Linking Electronic Health Records Across
Institutions to Understand Why Women
Seek Care at Multiple Sites for Breast
Cancer
Caroline A. Thompson, PhD, MPH
Palo Alto Medical Foundation Research Institute
Electronic Data Methods Forum Symposium
June 7, 2014, San Diego, CA
COLLABORATORS
Harold S. Luft, PhD
Palo Alto Medical Foundation Research Institute
Allison Kurian MD, MS
Stanford University Medical School
Oncology and Health Research and Policy
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BREAST CANCER PATHWAYS
• Brest cancer
treatment is a long
and complex
“journey”
• Individual “pathways”
may include multiple
types of treatments,
physicians, facilities,
and/or specialty care
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BREAST CANCER CARE ACROSS
ACADEMIC AND COMMUNITY SETTINGS
• PAMF: Multispecialty
community health
care system in
Greater Bay Area
• Stanford: Academic
medical center with
surgical and inpatient
facilities, serving
same catchment area
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ACADEMIC AND COMMUNITY
ELECTRONIC HEALTH RECORDS (EHR)
PAMF (“Community”):
• Long term primary care follow-up
• Lack comprehensive claims data
• “Blind” to out-of-network care
Stanford (“Academic”):
• Tertiary academic center
• “One-time” consultations; specialty care
• Limited long-term follow-up
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CALIFORNIA CANCER REGISTRY (CCR)
Statewide population-based cancer surveillance system
• Collected:
– Tumor details
– Diagnosis facility
– Initial treatment summaries
• NOT collected:
– Detailed treatment history
– Treatment facilities
– Cancer recurrences
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BREAST CANCER CARE PATHWAYS
Diagnostic radiology
Medical oncology
A
Surgical oncology
Breast reconstruction
Treating clinic
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BREAST CANCER CARE IN A
FRAGMENTED HEALTHCARE SYSTEM
C
A
Diagnostic radiology
Medical oncology
Medical oncology
Recurrence
Surgical oncology
B
Breast reconstruction
Treating clinic
Community center
Tertiary center
Out of area center
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ONCOSHARE DATA INITIATIVE
• Richard & Susan Levy
Family Trust
• Multiple data linkages:
–
–
–
–
Stanford EHR
PAMF EHR
CCR tumor details
Myriad genetics
• For all women treated for
breast cancer at either
(or both) institutions,
from 2000-2011.
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Weber, et al. AMIA Annu Symp Proc. 2012; 2012: 970-978.
What can we learn from linking EHR?
“Data linkage identified 16% of patients were
treated in two health care facilities and, despite
comparable prognostic factors, received far more
intensive treatment.”
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BREAST CANCER PATHWAYS
SCREENING
-Mammography
-MRI
-Ultrasound
DIAGNOSIS
-MRI
-Ultrasound
-Biopsy
-Histology
-Pathology
ELECTRONIC HEALTH RECORDS
Pt 1
Pt 2
Pt 3
Pt 5
Pt 6
TREATMENT
-Surgery
-Chemotherapy
--Radiation
POST-TREATMENT
SURVEILLANCE
-Mammography
-Recurrence
-Survival
DEFINING THE ANALYTICAL COHORT
•
•
•
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All women with
174x ICD9 code
in EMR sent to
CCR for
confirmation of
cancer
Some women
just seen for
consultation or
screening/
surveillance
Among women
treated, can we
identify a
diagnosing
procedure?
13,512 total patients
(174x ICD9 in EMR with confirmed
tumor details provided by CCR)
4,806 (36%)
Screening/Diagnosis or
Surveillance only
1,282 (9%)
Physician consultation
only
7,424 (55%) Received
interventions for primary
breast cancer
5353 (72%) Diagnosed
and treated
2071 (28%) Treated but
diagnosed elsewhere
FACILITY USE BY CARE PERIOD
(N=7,424 treated patients)
Facility
Overall
Screening
Diagnosis
Treatment
Surveillance
Community
3,074 (41%)
1,934 (26%)
3,293 (44%)
3,395 (46%)
3,165 (43%)
Academic
3,162 (43%)
383 (5%)
2,591 (35%)
3,509 (47%)
2,470 (33%)
Both
1,188 (16%)
30 (0.4%)
449 (6%)
520 (7%)
469 (6%)
Other
-
5,077 (69%)
1,091 (14%)
-
1,320 (18%)
Screening
Diagnosis
Facility
Both
Overall
1,188 (16%)
30 (0.4%)
449 (6%)
Treatment
520 (7%)
Surveillance
469 (6%)
2nd Opinion
only
110 (9%)
2 (6%)
130 (29%)
112 (22%)
203 (43%)
Diagnostics
/ Treatment
1078 (91%)
28 (94%)
319 (71%)
408 (78%)
266 (57%)
FACILITY USE BY CANCER STAGE
(N=6,984 with staging data)
Cancer
Stage
Diagnostic Procedures
Treatment
Interventions
Facility Switch after
Diagnosis
One
Facility
Both
Facilities
One
Facility
Both
Facilities
No
Yes
DCIS
(N=1,147)
15%
21%
15%
18%
11%
14%
Stage I
(N=2,607)
35%
39%
35%
31%
39%
27%
Stage II
(N=2,310)
31%
31%
31%
37%
29%
40%
Stage III
(N=688)
9%
5%
9%
10%
8%
13%
Stage IV
(N=232)
3%
3%
3%
3%
2%
4%
FACILITY USE BY TREATMENT
EPISODES
Episode
characteristic
Overall
Treatment periods
Surveillance periods
One
Facility
Both
Facilities
One
Facility
Both
Facilities
One
Facility
Both
Facilities
Mean number
of treatment
episodes
1.2
1.4
1.2
1.6
1.2
1.6
% with >1
treatment
episode
16%
29%
17%
41%
20%
40%
90
103
89
131
105
111
Average
episode length
in days
CONCLUSIONS
Linking EHR data from multiple neighboring healthcare
systems can improve understanding of cancer pathways.
HOWEVER:
• Careful consideration of the complexity of the treatment
process is necessary to make valid inferences.
– How many treatment periods?
– How long was the treatment period?
– What about pre- and post- treatment periods?
• Longitudinality of the data must be preserved.
WORK IN PROGRESS
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Funding Acknowledgement:
Richard & Susan Levy Family Trust
Contact:
Caroline A. Thompson, PhD, MPH
Palo Alto Medical Foundation Research
Institute
Email: [email protected]
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