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!!