Session 5: Optimizing NC Cancer Outcomes Olshan, Ribisl, Carpenter

May 25, 2011

Optimizing Cancer Outcomes in North Carolina

Andy Olshan

Interim Associate Director

Population Sciences

Program Leader

Cancer Epidemiology

UCRF Strategic Theme

Optimizing Cancer Outcomes in North Carolina

Steering Committee:

Marci Campbell

Laura Linnan

Cathy Melvin

Andy Olshan

Kurt Ribisl

Also: Paul Godley, Barbara Rimer

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Optimizing NC Cancer Outcomes To use the state of North Carolina as a laboratory

tracking the occurrence and treatment of cancer through data systems and large population- and hospital-based studies.

To use these data to initiate research aimed at

improving community prevention, early detection in the population, and the quality of oncology and survivor care.

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Optimizing Cancer Outcomes

Current Initiatives

North Carolina Integrated Cancer Information and Surveillance System (ICISS)

Health-E-NC Core Project

Carolina Breast Cancer Study 3 (the Jeanne Lucas Study)

UNC Health Registry (Cancer Survivor Cohort)

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CBCS III: The Jeanne Hopkins Lucas Study

Funded by the University of North Carolina-Chapel Hill

University Cancer Research Fund

CBCS III STUDY DESCRIPTION

The Carolina Breast Cancer Study (CBCS) is an ongoing population-based study examining the causes of breast cancer.

In CBCSIII, we will interview an

additional 3,000 women with newly diagnosed breast cancer, increasing the study’s size to over 7,000 women.

PREVIOUS CBCS RESULTS Among the 4,000+ women already enrolled in CBCS, some breast cancer risk factors (e.g. lack of breast-feeding, higher anthropometric measurements, age at first pregnancy) are more prevalent in certain

race and age groups

Breast cancer has four distinct, intrinsic subtypes with different biologic traits: 1) Luminal A, 2) Luminal B, 3) Her2+/ER-, 4) Basal-like

breast cancer

Women with HER2+/ER- and basal-like subtypes exhibit poorer survival rates than women with other breast cancer subtypes

Premenopausal, African-American women are more likely to have

basal-like breast cancer, which could contribute to their poorer prognosis

CBCS III STUDY PURPOSE

To uncover why younger African-American women tend to get more aggressive forms of breast cancer

To examine racial inequities in treatment and access

to care in relation to survival and quality of life

CBCS III STUDY DESIGN 44 NC counties, six-year enrollment period

(2008 – 2014) Rapid-case ascertainment (w/in 2 mos. of

diagnosis) Physician notification In-home interview Biologic sample and medical records

collection

Telephone follow-up every 9 months for two to three years after enrollment to capture treatment

CBCS III RESPONSE RATES

(05/09/2011)

Black Subjects Non-Black Total

Ages: 20-49 50-74 20-49 50-74

Contact Rate: (Contacted Women/Total)

91.3% (514 / 563)

93.2% (645 / 692)

96.3% (576 / 598)

97.8% (622 / 636)

94.7% (2357/2489)

Cooperation Rate: (Completed Interview/ Eligible Contacted Women)

81.1% (370 / 456)

73.4% (409 / 557)

84.1% (429 / 510)

78.2% (431 / 551)

79.0% (1639/2074)

Response Rate: (Completed Interview/ Eligible Selected Women)

73.3% (370 / 505)

67.7% (409 / 604)

80.6% (429 / 532)

76.3% (431 / 565)

74.3% (1639/2206)

CBCS III Follow-Up #2 Overview (thru 05/09/2011)

18-month contact outcomes: # %

Contacts attempted 474

Contact completed 451 95.15

Refused further contact 2 0.42 Deceased since follow-up #1 telephone interview 17 3.59

Lost to follow-up 4 0.84

Jeannette T. Bensen PhD, MS Debra E. Irwin PhD, MSPH

UNC – Chapel Hill

Cancer Survivorship Cohort

UNC Health Registry (HR) Objective

– To create a longitudinal cancer survivorship cohort (n=10,000) to be used as an

interdisciplinary resource to study issues related

to cancer survivorship

– Treatment type, exposures, health care access

patient/tumor genomics and impact on treatment

effectiveness/side effects/toxicities, QOL & survival

– ID eligibility for clinical trials/future research

Global Consent

Medical records abstraction

Interview questionnaire data*

Tissue procurement and banking*

Biospecimen collection and banking*

Blood (plasma, serum, DNA)

Specimens collected as a part of clinical care

Annual follow-up questionnaires

Re-contact for future studies

* Goal is pretreatment collection

Progress to-date

Launched pilot in April 2010 in GI cancer clinics

The main goal of the pilot was not to enroll all eligible patients but instead to enroll enough patients to establish the necessary protocols and database linkages.

developed novel video informed consent process

created study protocols;

developed IT systems to collect and track patients;

integrated study procedures into the NCCH clinical setting; and

provided training for staff members.

Progress to-date

Established pre-consent and consent procedures 382 patients recruited through 4/30/11

18% African Americans

5% Hispanic/Latino

~70% consent rate

Target primarily new patients for recruitment

86% of new patients have blood collected at time of consent (others check back)

Developing and piloting post-consent visit activities (Qx, MRA and Follow-up)

Ready to expand recruitment into other clinics

Ongoing Areas of Focus

Integration within the clinic setting

IT coordination across multiple source systems

Enlisting additional support of MD

Submitted NCI Cohort Grant

Overview of Health-e-NC Initiative Kurt M. Ribisl, PhD

May 25, 2011 – Cancer Center Retreat

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How Health-e-NC fits in

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Health-e-NC Team

Optimizing Cancer Outcomes Theme Team

(Andrew Olshan, Chair)

H-e-NC Faculty Director

(Marlyn Allicock)

Administrative Assistant

(Demetria Brooks)

H-e-NC Leadership Team

Marci Campbell

Laura Linnan

Cathy Melvin

Kurt Ribisl

Deborah Tate

H-e-NC Project Director

(Barbara Martin)

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Why Health-e-NC?

• To deliver and test interventions to improve cancer outcomes for NC residents

• Support new & innovative health behavior research in timely way

• Leverage pilot grant funding and increase # and quality of external grants

• Promote collaboration & team science – Among UNC researchers – Between UNC and community research partners

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Priorities: Types of Cancers

-

5,000

10,000

15,000

20,000

25,000

30,000

NC Cancer Deaths, 2002-2006

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How can we improve access to supportive care, pain management and other services for African

Americans with advanced cancer?

Problem: African Americans are more likely to have advanced cancer, yet less often get effective pain management, cancer communication, or supportive care.

Opportunity: Through a controlled study, test the Circles of Care program, which trains volunteer support teams for African Americans facing serious illness with cancer.

Research Q’s: What is the effect of volunteer support teams on cancer communication, quality of life and quality of supportive and palliative care for African Americans living with advanced cancer?

Outcomes: Improve care and quality of life

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Hanson (PI) with team

Circles of Care: Supporting African Americans with Cancer

Does providing a medical home for Medicaid

patients improve cancer care?

Problem: Need to improve cancer care in vulnerable populations insured by Medicaid.

Opportunity: Can we adapt an existing innovative & effective program and apply to cancer care?

Research Qs: (1) Are patterns of survivorship care among breast cancer Medicaid patients consistent with guidelines? (2) Are these patients engaged in a medical home? (3) Can we engage stakeholders & develop a Medicaid medical home model specific for cancer survivors?

Outcomes: Will demonstrate the feasibility of using the new Integrated Cancer Surveillance and Information System (ICISS) database to support targeted improvement in cancer care in NC.

Wheeler (PI) with team

Meeting the Needs of Cancer Survivors in North Carolina: Assessing and Improving the Medicaid Medical Home Model

How can stores help communities get healthier?

Problem: Tobacco products are predominantly sold at convenience stores, gas stations and supermarkets, which also sell food, especially junk food.

Opportunity: Can we take advantage of new & tighter federal restrictions on tobacco ads to promote healthy foods in NC retail stores?

Research Qs: (1) Identify tobacco retailers using lists and ground-truthing (2) What are the racial/ethnic and socioeconomic disparities in retailers? (3) What is the relationship between product access and marketing for both tobacco, food, and activity promotion at and near these stores?

Outcomes: Will share maps and study findings with policy advocates and community groups.

Ribisl & Evenson (co-PIs) with team

Healthy Stores, Healthy Communities

Where do African American and Latino citizens prefer to learn about cancer screening & prevention in their

communities?

Problem: African-Americans have higher cancer rates, and Latinos have increased risks. Prevention efforts that focus on a single setting only reach a subset of these populations.

Opportunity: Can we reduce cancer disparities by reaching these groups in multiple settings in synergistic ways?

Research Q’s: What are the combinations of community settings that maximize coverage and convergence for interventions with these populations? What are the costs of different multi-setting strategies?

Outcomes: Could establish new & innovative methods for maximizing coverage and convergence of health interventions

Weiner & Linnan (co-PIs) with team

Addressing Cancer Disparities by Studying Issues of Coverage, Convergence & Cost in Multiple Settings

Can community colleges across North Carolina be hubs for

promoting healthy behaviors that we know prevent cancer?

Problem: Many cancers are linked to unhealthy lifestyle behaviors that could have been prevented.

Opportunity: NC’s 58 community colleges offer great potential as a setting for cancer prevention interventions because of their broad reach to populations with the greatest cancer-related disparities.

Research Q’s: (1) What are community colleges currently doing to prevent cancer? (2) What are the interests, assets and barriers among its leaders to implement effective interventions? (3) What help do they need?

Outcomes: Develop a menu of evidence-based activities and identify how best to help community colleges build capacity to increase adoption and implementation of them.

Linnan (PI) and team will work with community college leaders across NC.

Partnering with NC Community Colleges To Prevent Cancer Among Students, Employees and Community Residents

How can we increase rates of colorectal cancer screening among Medicaid beneficiaries?

Problem: Colorectal cancer (CRC) screening is underutilized, particularly among low income and less educated.

Opportunity: Several interventions have been shown to be effective in increasing screening, but the best combination of interventions has not been well-studied.

Research Q: Can screening rates be increased by using a combination of mailed patient decision aids and telephone-based assistance from a patient navigator?

Outcomes: If intervention is successful in increasing use of CRC screening, it could reduce CRC incidence and mortality, and also decrease health care costs.

Co-PIs Pignone & Lewis with team

Improving Colorectal Cancer Screening in NC Medicaid Beneficiaries

ICISS: The Integrated Cancer Information and Surveillance System

Bill Carpenter

May 25, 2011

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ICISS: The Integrated Cancer Information and Surveillance System

• Vision: – Improve cancer outcomes in North Carolina by building a unique

research resource linking metrics of cancer incidence, mortality, and burden and data sources at an individual and aggregate level that describe health care, economic, social, behavioral, and environmental patterns, enabling innovative research for understanding how to:

• Discover risk factors for cancer

• Best prevent and treat cancer

• How to disseminate and implement proven prevention, early detection, and health systems changes

• Improve life after a cancer diagnosis

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ICISS: Initial Steps

• Building a multipayer linked data resource to study the 55% of the NC population age 65 and over with cancer, the 45% of the NC population with cancer and under age 65, greater proportion of the at-risk population.

– Central Cancer Registry Cases, 2003-2008

– 100% sample of NC Medicare, Medicaid, Private for these years (Cancer and non-Cancer)

– Regional Data, Health Resource:

• Area Resource Files (ARF)

• Medicare Physician Identification and Eligibility Registry (MPIER)

• Online Survey Certification And Reporting (OSCAR)

– Behavioral

• BRFSS, others

– NCI Clinical Trials Enrollment

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ICISS: Future Opportunities Research Data Development

• Consider linking to other data for very rich characterization of cancer patient and at-risk populations:

– Other observational studies and clinical trials • UNC Survivorship cohort; CBCS3 ??

– Biorepository data: Novel look at tumor characteristics; can now track course of care and outcomes.

– Geospatial

– Environmental • Groundwater Arsenic (Fry)

– Laboratory • Pathology, Cytology, PGx

– Electronic Medical Records

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• Claims: Understand diagnoses, procedures • Lab/EMR: Understand lab values, test

results and indications for the care received

Next steps: Resources for UNC and Other NC Researchers

• Research Systems and Resource Development:

– Coding catalogs, nomenclature, advanced cross-referencing

– Systems for Knowledge Retention and Collaboration

– Reference data characterizing aspects of NC cancer environment

• Partnering with UNC researchers:

– Research questions falling under current DUAs

• SEER-Medicare capacity and expertise 5

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Examples of studies possible with ICISS: Medicaid BCS +/- RT

• Background: – 1998 and 1999 data: indicated that 33% of Medicaid early-stage breast

cancer women did not receive RT after BCS (Anderson, Kimmick et al. 2008)

• Current study: – 1,271 Medicaid participants diagnosed with early-stage breast cancer in

2003-2007

• Summary Findings: – Significant improvement in receipt of guideline-recommended RT post-

BCS, compared to studies of earlier years.

– Limited evidence of race-, age-, or urban/rural-related disparities in RT use.

– Variation in time to initiation of RT

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Examples of studies possible with NCI Cancer Treatment Trial Enrollment in NC

Overall, 2005-2007

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Examples of studies possible with ICISS: NCI Cancer Treatment Trial Enrollment in NC

Minorities, 2005-2007

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ICISS: Research Interest, Opportunity

– Supporting studies in cancer prevention, early detection, outcomes: • Prostate, Breast Cancer: Distance to provider, provider characteristics associated with stage at

diagnosis, treatment selection, racial differences; Methods for risk stratification

• Colon cancer: Racial, regional differences in colon cancer screening, and association with stage at diagnosis and outcomes

• Pancreatic cancer: Factors associated with non-receipt of curative surgery for Pancreatic cancer

– (Near?) Future: • Outcomes / Etiology :

– Examine tumor characteristics from biorepository: Link to ICISS to retrospectively study treatment and outcomes?

– Groundwater arsenic (and other environmental exposures) association with cancer incidence, outcomes

• Research Methods: – Building appropriate models for comparative effectiveness and outcomes research – different from Randomized

Controlled Trials (“Clinical Trials”)

• Infrastructure and Program Support: – Utility of claims for augmenting case ascertainment and collection of registry-required elements

– Effectiveness of State programs.

– Understand pathways for innovation diffusion: getting the state-of-the-art into broader practice in NC.

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Goals • Now:

– Demonstrate productivity and good stewardship with data. – HSR/Outcomes studies – Explore potential data linkages for novel studies

• Future:

– Revisit CMS, private insurers and other data sources to negotiate for greater latitude with regard to use of data.

• Greater opportunity and latitude for data use by non-UNC researchers

– Discussions with SEER-Medicare program to piggy-back on their

linkage, may facilitate use of data among broader audience

Discuss Ideas, more info: bill.carpenter@unc.edu

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Meet the ICISS Team

• Building Expertise with these data 1. ICISS Resource Development, Research Study Development and Co-I Support for HSR,

EPI • Anne-Marie Meyer, PhD • William Carpenter, PhD

2. Statistics, Data Management, Research Support • Yang Wu, PhD (Statistics) • Seth Tyree, MS, MA (Epi, Stats, Data management) • Ravi Goyal, MS (Econ, Data management) • Huan Liu (Stats, data management, SEER-Medicare) • Danielle Durham (Research reference)

3. IT Development and Systems Integration, Software engineering, Systems design and development

• Adrian Meyer, MS • Ciearro Faulk, MS • Roger Akers, MS

4. Study Coordination and Support • Lisa DiMartino, MPH • Tara Strigo, MPH