New Hampshire Mammography Registry (NHMN)


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  • One main site (which includes 3 satellite sites) sent us a file in April. These data will be included in the 2008 submission.
  • One main site (which includes 3 satellite sites) sent us a file in April. These data will be included in the 2008 submission.
  • One main site (which includes 3 satellite sites) sent us a file in April. These data will be included in the 2008 submission.
  • New Hampshire Mammography Registry (NHMN)

    1. 1. 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
    2. 2. 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
    3. 3. Mammography is widely accepted as theMammography is widely accepted as the screening modality of choice for earlyscreening modality of choice for early detection of breast cancer.detection of breast cancer.
    4. 4. New Hampshire Mammography Network Funded by the National Cancer Institute Tracy Onega, PhD – Principal Investigator
    5. 5. NHMN Funding History  Funded originally by the DOD in 1994Funded originally by the DOD in 1994  Funded by the NCI since 1999 as part of aFunded by the NCI since 1999 as part of a national breast cancer surveillance programnational breast cancer surveillance program Breast Cancer Surveillance Consortium (BCSC)Breast Cancer Surveillance Consortium (BCSC)  Current cycle ends in 2010Current cycle ends in 2010
    6. 6. Breast Cancer SurveillanceBreast Cancer Surveillance Consortium (BCSC)Consortium (BCSC) NHMNNHMN is one of 5 sites participating in the BCSC
    7. 7. Those who have contributed to NHMN • New Hampshire women • NH mammography facilities = 47 • NH radiologists = 144 Pathology laboratories New Hampshire State Cancer Registry
    8. 8. 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%
    9. 9. NHMN Data Overview
    10. 10. 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 informationOther clinical information collectedcollected  History of previous breastHistory of previous breast proceduresprocedures  Use of hormone replacementUse of hormone replacement therapytherapy  Breast densityBreast density  Radiologist assessmentRadiologist assessment  Radiologist recommendationRadiologist recommendation  Digital or filmDigital or film
    11. 11. 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
    12. 12. 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
    13. 13. 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
    14. 14. 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?
    15. 15. Examples of how NHMN radiologist exam data has informed clinical practice…. Radiologist Assessment and Recommendation 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.
    16. 16. 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
    17. 17. 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)
    18. 18. 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
    19. 19. 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.
    20. 20. 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
    21. 21. 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
    22. 22. Colonoscopy is considered the major weapon for the detection and prevention of colorectal cancer.
    23. 23. 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
    24. 24. Current Status of NHCR ALL 36 colonoscopy sites in New Hampshire have agreed to participate in the NHCR!!
    25. 25. NHCR Data Overview
    26. 26. 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
    27. 27. 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  InsuranceInsurance  Race/ethnicityRace/ethnicity  Health historyHealth history  SmokingSmoking  AlcoholAlcohol  ExerciseExercise
    28. 28. Data Collection Methods Colonoscopy Exam Important Patient Risk InformationImportant Patient Risk Information  Personal history of polypsPersonal history of polyps  Personal history of colorectal cancerPersonal history of colorectal cancer  Family history of colorectal cancerFamily history of colorectal cancer • Including age at diagnosis and number of familyIncluding age at diagnosis and number of family membersmembers  Familial polyposis or HNPCCFamilial polyposis or HNPCC Patient Survey FormPatient Survey Form ––also collectsalso collects  Family history of polypsFamily history of polyps
    29. 29. 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
    30. 30. 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 colonoscopy?Will they have another colonoscopy?  Will they recommend to family?Will they recommend to family?  Do they feel they have reduced their riskDo they feel they have reduced their risk of colorectal cancer?of colorectal cancer?
    31. 31. 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
    32. 32. 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
    33. 33. Construct tissue microarray • Pathologist selects tumor • Tissue microarray cores • Cut slides Immunohistochemistry • pathologist scores staining BT Harris
    34. 34. • Implement all 36 NH sites by end of 2009 • Design and develop feedback reporting for sites use in clinical practice Where we are headed….
    35. 35. Examples of how NHCR patient survey data can inform colorectal screening research knowledge…. Smoking 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?
    36. 36. Examples of how NHCR colonoscopy exam data may inform colorectal screening research knowledge…. Polyp location 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 Recomm endation Follow-up Recomm endation 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?
    37. 37. 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.
    38. 38. 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.
    39. 39. Population Registries Challenges and Concerns  Ongoing funding  Maintaining site participation  Protection of patient confidentiality
    40. 40. Thank You!!