the central cancer registry data use for cancer control programs meena patil and jeffrey soule...

The central cancer registry data use for cancer control programs

Meena Patil and Jeffrey Soule

Oregon State Cancer Registry

www.healthoregon.org/oscar10/09/2015

HEALTH PROMOTION AND CHRONIC DISEASE PREVENTION

Public Health Division

Users of OSCaR data



↓↓

OSCaR Data

Patient Notification

Program

National Calls for

Data: NAACCR

NPCR-CSS

Annual Report:

Cancer in Oregon

Data requests / data linkages with Internal and External Partners

Academic Research

Cancer Cluster

Inquiries

Legislative

Data Requests

Time delay in OSCaR Annual Reports (2 years)

There are several reasons for lag time in OSCaR annual reports:

•OSCaR regulations state that facilities must report each case of reportable cancer within 6 months of the date of diagnosis or receiving initial treatment at the facility.

•Usually records from different facilities (hospitals, path labs etc.) are merged to make a complete case

•Each complete record is checked for edits to meet the NAACCR standards before including the case in the analytic database.

HEALTH PROMOTION AND CHRONIC DISEASE PREVENTIONPublic Health Division

OSCaR 2012 Annual Report

• Expected to be released in November 2015• Includes individual reports of all cancer sites combined,

female breast, prostate, lung, colorectal, and melanoma• Table 1 and 2 include age-adjusted incidence and mortality

rates for most common cancer sites by gender (2008-2012)• Incidence and mortality rates by counties for all cancer sites

combined and five leading cancers (2008-2012)• Technical section






All cancers - Fast Facts Oregon 2012 Male Female TotalCancer Incidence Total cancer cases 2012 10,228 11,462 21,690

Invasive Cases 9,148 9,985 19,133 In-situ Cases 1080 1,477 2,557

Rates Crude Rate 512.6 493.7 503.3Age-adjusted Rate 438.5 417.4 424.11US Age-adjusted Rate (2012) 483.0 411.7 440.32Oregon APC (2008-2012) -4.1 -1.2 -2.6Cancer Mortality Total cancer deaths 2012 4,103 3,658 7,761Rates Crude Rate 212.5 185.8 199.0Age-adjusted Rate 197.2 143.5 166.4US Age-adjusted Rate (2012) 200.6 141.9 166.4Note: Incidence and mortality rates are per 100,000 population, age-adjusted to the 19-age-group 2000 U.S. standard population. Total number includes male, female and other genders.

1U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2012 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2015. Available at: www.cdc.gov/uscs.2APC = Average Annual Percent Change

Annual data submission to CDC/NAACCR

• OSCaR data submitted to NPCR-CDC in November• Submitted to NAACCR in December• Data is used for NAACCR Fast Stats, CINA reports• Data is used for United States Cancer Statistics reports• Report to the Nation publication• State Cancer Profiles



Useful Links to Cancer Statistics

• Oregon State Cancer Registry Data and Publication• www.healthoregon.org/oscar

• Oregon Mortality data• http://public.health.oregon.gov/BirthDeathCertificates/VitalStatistics/death/

Pages/index.aspx• Oregon Behavioral Risk Factor Surveillance System (BRFSS data)

• https://public.health.oregon.gov/DiseasesConditions/ChronicDisease/DataReports/Pages/index.aspx

• National Cancer Statistics• https://nccd.cdc.gov/uscs/Index.aspx• State Cancer Profiles• http://statecancerprofiles.cancer.gov/• NAACCR Fast Stats• http://faststats.naaccr.org/



National data sources: NAACCR Fast Stats



National data sources(CDC): USCS Publications



National data sources (CDC and NCI): State Cancer Profiles



OSCaR Data Use in 2013 Oregon Legislative Session

• HB2896A Restricts use of tanning devices by minors

• SB722A Comprehensive plan for HPV-related cancers

• SB420A Requires health facilities to notify women of breast density



Tanning Bed Legislation – 2013Statistical Background

• In 2008 and 2011, Oregon women had the highest rates of melanoma in the U.S.

• The American Academy of Dermatology reported that across the U.S., melanoma was the 2nd most common cancer among women in their 20’s (after thyroid cancer); however in Oregon, melanoma was found to be the leading cancer for women in their 20’s.

• From 1973-2006, Oregon melanoma rates for 15-29 year old females increased at 2% per year while rates for males in this age group increased at only 0.7% per year.

• Finally, the 2009 CDC Youth Risk Behavior Survey found that 37% of white high school females used tanning beds.

HEALTH PROMOTION AND CHRONIC DISEASE SECTIONOregon Public Health Division

OSCaR Data Use In 2013 Oregon Legislative Session



Source: Oregon State Cancer Registry

Tanning Bed Legislation : February 27, 2013


“House committee approves bill to ban teens from tanning salons”

OSCaR Data Requests


Internal Public Health Program Requests:•Breast and Cervical Cancer Program•Environmental Public Health Tracking Program•Acute and Communicable Disease Section •Genetics Program

External Partners: •OHSU•Northwest Portland Area Indian Health Board•MPH Students•County Health Departments•Oregon Hospitals •THE PUBLIC !!

OSCaR Confidentiality – HIPAA Exception


Section 1178 (b) the Social Security Act, as amended by the Health Insurance Portability and Accountability Act of 1996 (HIPAA), provides the following exemption to the HIPAA regulations, which, according to authoritative legal opinions covers the reporting of cancer case information to state cancer registries:

(b) PUBLIC HEALTH – Nothing in this part shall be construed to invalidate or limit the authority, power, or procedures established under any law providing for the reporting of disease or injury, child abuse, birth, or death , public health surveillance, or public health investigation or intervention.


OSCaR Confidentiality Provisions

Oregon Revised Statutes 432.530432.530 Confidentiality of information. (1) All identifying information regarding individual patients, health care facilities and practitioners reported pursuant to ORS 432.520 shall be confidential and privileged.


OSCaR Confidentiality - Data Items


OSCaR Confidentiality -

Confidentiality of Small Numbers:Before releasing aggregated data, the impact on privacy and confidentiality must be assessed. In general, release of cancer data containing more than one demographic variable or confidential identifier should follow the “Ten/Fifty” rule. Release should only occur if the numerator (cases or deaths) is more than ten or the denominator (applicable population) is more than fifty. This should prevent the inadvertent identification of a specific individual.


OSCaR Research Process – Providing Cancer Data

1. Researcher contacts OSCaR with a research proposal.2. Researcher fills out OSCaR Research Request Form and provides supporting documentation.3. OSCaR Advisory Committee reviews / approves study.4. Researcher fills out IRB form and provides supporting documentation .5. IRB reviews / approves study. 6. After the researcher has approval from the IRB, OSCaR staff can work with the researcher to provide data for the study.7. The research must submit a copy of any analysis or report using OSCaR data to give OSCaR an opportunity to review and comment.8. The researcher must provide OSCaR copies of any published report or article that use OSCaR data.


OSCaR Research Process – Patient Recruitment1. OSCaR first contacts the patient’s physician to inform

him/her that OSCaR is planning to contact the patient regarding the research study, unless instructed otherwise by the physician. After a period of time, if there is no response from the physician, OSCaR may contact the patient without physician consent.

2. OSCaR then contacts the patient to obtain permission to release their contact information to the researcher and to provide the patient with the researcher’s contact information.

3. Once patient approval is received, the researcher can contact the patient.

Randomized Controlled Exercise Trials in Cancer Survivors at Risk for Bone Fracture and DisabilityKerri Winters-Stone, PI

Funding: Susan G Komen for a Cure Foundation

Funding: Livestrong (formerly Lance Armstrong)

Funding: American Cancer Society

OSCaR was used as a major recruiting tool, along with MD referral, community events and study ads. 60%-80% of enrolled participants in these studies came from OSCaR notifications.

The GET FIT TrialNIH/NCI 1 R01 CA163474-01 PI: Winters-Stone; Co-I: Li F; Horak F; Nail L; Bennett J; Dieckmann N

• 12-month randomized controlled trial

• Comparison of two fall prevention exercise programs for efficacy in reducing falls in women treated with chemotherapy for cancer

– Enrolled 460 women cancer survivors throughout the Portland metro area into supervised exercise classes

– 255 women were enrolled after learning about GET FIT via letter sent through OSCaR (55% of total sample)

– OSCaR allows us to access a more representative sample of the cancer survivor population including low socioeconomic status and racial/ethnic diversity


OSCaR Cancer Cluster Inquiries

Cancer cluster – an unusually high number of the same type of cancer occurring over a given time period among people who live in the same geographic area.

What causes cancer?- Lifestyle

- Smoking- Unhealthy diet- Lack of physical activity- Alcohol consumption

- Genetics- Environmental exposures

Questions?

Contact:[email protected]

[email protected]

Thank You!



the central cancer registry data use for cancer control programs meena patil and jeffrey soule...

Documents

prostate cancer

incidenceleading cancer

common cancer sites

case of reportable cancer

national cancer institute

ageadjusted incidence

annual reporthealth

ageadjusted rate438