New Hampshire Mammography Registry (NHMN) New Hampshire Colonoscopy Registry (NHCR) Martha E. Goodrich, M.S Dartmouth Medical School/Norris Cotton Cancer Center The Power of Data in Evidence-Based Practice
Dec 13, 2014
New Hampshire Mammography Registry (NHMN)
New Hampshire Colonoscopy Registry (NHCR)
Martha E. Goodrich, M.S
Dartmouth Medical School/Norris Cotton Cancer Center
The Power of Data in Evidence-Based Practice
Presentation Overview
The New Hampshire Mammography Network (NHMN) Background/overview Current status Data collected and how it has informed practice
The New Hampshire Colonoscopy Registry (NHCR) Design and development Where we are now and where we are headed Data we will collect and how we will contribute
Data Registries – Golden Nuggets and Challenges
Mammography is widely accepted as Mammography is widely accepted as the screening modality of choice the screening modality of choice for early detection of breast for early detection of breast cancer. cancer.
New Hampshire Mammography
NetworkFunded by the National Cancer Institute
Tracy Onega, PhD – Principal Investigator
NHMN Funding History
Funded originally by the DOD in 1994Funded originally by the DOD in 1994
Funded by the NCI since 1999 as part Funded by the NCI since 1999 as part of a national breast cancer of a national breast cancer surveillance program Breast Cancer surveillance program Breast Cancer Surveillance Consortium (BCSC)Surveillance Consortium (BCSC)
Current cycle ends in 2010Current cycle ends in 2010
Breast Cancer Surveillance Breast Cancer Surveillance Consortium (BCSC)Consortium (BCSC)
NHMNNHMN is one of 5 sites participating in the BCSC
Those who have contributed to NHMN
• New Hampshire women
• NH mammography facilities = 47
• NH radiologists = 144
Pathology laboratories New Hampshire State Cancer
Registry
Current data status of NHMN
(1994-2008)
• NHMN Participants = 329,298 (479 men)
• Number of Mammograms = 1,055,358
• Number of Path reports = 68,332• % malignant cases = 33%
NHMN Data Overview
Data Collection Methods
Mammography: • NHMN forms - primary data collection method (70%)
• Electronic- files from mammography software systems (30%)
• Examples of data collected: Patient demographic informationPatient demographic information
Date of birthDate of birth Family history of breast cancerFamily history of breast cancer Personal history of cancerPersonal history of cancer Menstrual/menopause historyMenstrual/menopause history ParityParity EthnicityEthnicity Health insuranceHealth insurance BMIBMI
Other clinical information Other clinical information collectedcollected History of previous breast History of previous breast
proceduresprocedures Use of hormone replacement Use of hormone replacement
therapy therapy Breast densityBreast density Radiologist assessmentRadiologist assessment Radiologist recommendationRadiologist recommendation Digital or filmDigital or film
Data Collection Methods
Outcomes:
Pathology
Abstraction of pathology reports from pathology labs
Electronic data file from the NH State Cancer Registry
Survival
Death tape file provided by the NH State Cancer Registry
How NHMN data is disseminated..
• Research–Manuscript publications and scientific meetings
• Clinical Practice – Feedback (audit) reports on the level of facility, radiologist and state (overall NHMN)
• Volume information• Cancer detection rates• Recall rates• Biopsy yield rates
Example of how longitudinal registry data
contributes to research and clinical
practice.
Define or describe the
problem
Analytic assessment of registry
data
Develop and conduct a targeted
intervention
Re-analyze data
for impact of the
intervention
Disseminate information
through publication or
feedback reporting
Examples of how NHMN patient survey
data can inform breast cancer research
knowledge….Date
of Birth
Does risk of breast cancer increase or decrease as a woman ages?
Do older women adhere to screening recommendations?
Parity
Are women who have never had children at an increased risk of getting breast cancer?
Does having children later in a woman’s life increase her risk of breast cancer?
BMI
Is obesity a barrier to adherence to mammography screening?
Does post-menopausal weight gain increase a woman’s risk of breast cancer?
Examples of how NHMN radiologist
exam data has informed clinical
practice….
Radiologist Assessment and Recommendatio
n Data
• Detection reports – Provide breast cancer detection rates on the level of the radiologist and the overall practice (including false – negative cases).
• NHMN feedback reports provide opportunity for radiology practices to monitor and discusstheir overall performance compared to the state (NHMN aggregate).
• Recall reports - Provide information on recall rates which help practices monitor how often radiologists are calling women back for additional views or imaging.
• Biopsy yield reports – Provide information on how many cases recommended for biopsy had a cancer.
Studies Conducted Using NHMN
Data
1996-98 - Studies on Agreement Among NH Pathologists Interpretation of Breast Tissue
1997-2004 – Studies on Adherence to Screening Mammography
Observational study on factors related to adherence
Randomized clinical trial using tailored telephone counseling
Comparison of the New Hampshire Behavioral Risk Factor Surveillance System (BRFSS) data report to NHMN findings
Studies Conducted Using NHMN Data
• 1999 – 2004 - Hormone Replacement Therapy and Accuracy of Mammography
• 1999 – 2002 - Factors Associated with Variability in Interpretive Performance
Time in Practice
Reimbursement Type
Concern About and Experience with Malpractice
Volume
Use of Computerized Aided Detection (CAD)
Current Studies Using NHMN Data
2004-2009 – Factors Associated with Variability in Interpretive Performance II
Determine radiologists perceptions of risk of malpractice and other factors
Evaluate the feasibility and impact of a 1 hour interactive web-based audit intervention
Current Studies Using NHMN Data
2006-2009 – Assessing and Improving Mammography
To determine the effects of radiologists mammographic interpretive volume on clinical interpretive performance;
To assess radiologists’ interpretive skills and determine if performance on assessment test sets is associated with performance in clinical practice;
To develop and test two interventions designed to improve radiologists’ mammography interpretation skills.
NHMN manuscripts
• New Hampshire - 55 published manuscripts
• Breast Cancer Surveillance Consortium – 219 published manuscripts
• Journals include JNCI, JAMA, NEJM, Radiology, AJR, Cancer, etc
• Contributed to the Institute of Medicine Report on the Quality of Mammography
New Hampshire Colonoscopy Registry (NHCR)
• Pilot funding – NCI 2 year grant
• NCI funded 5 year grant - 8/2008 – 7/2013
Allen Dietrich, MD – Principal Investigator
Lynn Butterly, MD – Co-Investigator
Colonoscopy is considered the major weapon for the detection and prevention of colorectal cancer.
Current Status of NHCR
From our pilot study…
• 85% active consent rate
• Over 14,000 colonoscopy exams
• Over 5,000 polyp pathology reports
• Over 7,000 patient follow-up surveys
Current Status of NHCR
ALL 36 colonoscopy sites in New Hampshire have agreed to participate in the NHCR!!
NHCR Data Overview
Data Collection Methods
Colonoscopy Exam
NHCR forms - primary data collection method
Electronic data – colonoscopy exam data from endoscopy software reporting
Pathology reports – pathology reports for all colorectal polyps and/ or colon cancer resections
Data Collection Methods
Colonoscopy Exam
Patient Survey Form (completed by the patient)Patient Survey Form (completed by the patient)
Patient Demographic CharacteristicsPatient Demographic Characteristics
Endoscopy historyEndoscopy history EducationEducation Insurance Insurance Race/ethnicityRace/ethnicity Health historyHealth history
SmokingSmoking AlcoholAlcohol Exercise Exercise
Data Collection Methods
Colonoscopy Exam
Important Patient Risk Important Patient Risk InformationInformation
Personal history of Personal history of polypspolyps
Personal history of colorectal Personal history of colorectal cancer cancer
Family history of colorectal cancerFamily history of colorectal cancer• Including age at diagnosis and number of Including age at diagnosis and number of
family membersfamily members
Familial polyposis or Familial polyposis or HNPCCHNPCC
Patient Survey Form Patient Survey Form ––also collectsalso collects
Family history of polypsFamily history of polyps
Data Collection Methods
Colonoscopy Exam
Colonoscopy Exam FormColonoscopy Exam Form Indication foIndication for procedure – including surveillance for
personal or family history of polyps and/or colorectal cancer
Findings
Polyp - location, size and treatment
Type and quality of the exam preparation
Medication used
Follow-up recommendation
Additional Data Collection
Patient Follow-up Questionnaire Patient satisfactionPatient satisfaction
Were they pleased with their care?Were they pleased with their care?
Post complicationsPost complications Did they have excessive bleeding, Did they have excessive bleeding,
headaches, etc.headaches, etc.
Assessment of barriers and motivatorsAssessment of barriers and motivators PainPain PreparationPreparation Will they have another Will they have another
colonoscopy?colonoscopy? Will they recommend to family?Will they recommend to family? Do they feel they have reduced Do they feel they have reduced
their risk of colorectal cancer?their risk of colorectal cancer?
What we have already done!
Study conducted using access to NHCR
Tissue Microarray Project
Angeline S. Andrew, PhD
Hypothesis:
Calcium synergizes with vitamin D to prevent colorectal cancer and adenoma recurrence
Registry to bench process
• Identified NHCR participants that had a polyp removed during colonoscopy
• Contacted patients for consent to use polyp tissue sample• Consent rate = 70%
• List of consenting patients sent to pathology
Construct tissue microarray• Pathologist selects tumor• Tissue microarray cores• Cut slides
Immunohistochemistry• pathologist scores staining
BT Harris
• Implement all 36 NH sites by end of 2009
• Design and develop feedback reporting for sites use in clinical practice
Where we are headed….
Examples of how NHCR patient survey data
can inform colorectal screening research
knowledge….Smokin
g
Does smoking increase a person’s risk of having colorectal polyps?
Are people who smoke more likely to have additional colorectal polyps at their follow-up colonoscopy?
Exercise
BMI Are people with higher BMI at risk of having more advanced colorectal polyps?
Do people who exercise routinely have fewer colorectal polyps at follow-up than those who do not exercise?
Are people who exercise more likely to adhere to screening recommendations?
Examples of how NHCR colonoscopy exam data
may inform colorectal screening research
knowledge….Polyp locatio
n
Are advanced polyps more likely to be found in a certain part of the colon?
Are polyps found to be larger in certain parts of the colon?
Quality of Prep
Follow-up Recommendation
Follow-up Recommendation
Are patients with polyps at a follow-up more likely to have had a poor prep at their previous colonoscopy?
What is the association between type of prep and the quality of the prep?
What is the variability of follow-up recommendations among colonoscopists?
Examples of how NHCR data and feedback
reports will inform colonoscopy clinical
practice….
Information systems
Follow-up Recommendation
Follow-up Recommendation
Polypectomy rates (including findings at follow-up exams) on the level of the practice and colonoscopist compared to the state (NHCR).
Performance
Concurrence of patient and physician report of patient’s family history.
Monitor the variability of follow-up recommendation among colonoscopists.
Population Registries
Golden nuggets
Provide data linkages that enable practices and physicians to better monitor their overall clinical performance.
Longitudinal data follow-up.
Resource for bench research as well as important pathology studies.
Resource for quality improvement studies.
Population Registries
Challenges and Concerns
Ongoing funding
Maintaining site participation
Protection of patient confidentiality
Thank You!!