Minnesota Cancer Surveillance System (MCSS)

1. Minnesota Cancer Surveillance System (MCSS) Presentation to Genetics Work Group October 23, 2007 Sally Bushhouse, DVM, MPH, PhD, MCSS Director

2. Topics • History and description of MCSS • Contribution to public health • Requirements for research that involves patient contact • Comments about the question at hand

3. History of MCSS • Minnesota’s population-based cancer registry • Collects information on newly-diagnosed (incident) cancers in Minnesota residents • Bill was passed unanimously in 1987 (M.S. 144.671 - 144.69) • Data collection began in 1988 • Data set enlarged in 1995 (federal funding)

4. Data Sources • Pathology laboratories • Hospital-based cancer registries • Death Certificates • MCSS staff’s quality control activities • Review pathology logs • Review medical records when needed • Request info from physician offices

5. Data Collected • Record linkage items (name, date of birth, etc) • Demographics (age, sex, address, race, & ethnicity) • Treatment facility, pathology lab, physician • Cancer diagnosis information • Extent (stage) of disease at diagnosis • First course of treatment

6. MCSS Data processing • Add reports to database (electronically or manually) • Check data for valid codes and internal consistency • Link new records with existing records • Consolidate information when more than one report per person (51% of persons) • Follow up to find missing and resolve conflicting information

7. MCSS contribution to public health • M.S. 144.671: Purpose of MCSS is to: • Monitor cancer incidence • Assist in understanding perceived clusters • Target intervention resources • Inform health professionals and citizens about risks • Promote high quality research for cancer control

8. Cancer in Minnesota is not identical to U.S. cancer incidence, nor is it uniform within the state American Indian cancer incidence is much higher in Minnesota than in national data. Cancer trends in Minnesota do not mirror national trends. Colorectal cancer in urban vs. rural Minnesota Mesothelioma incidence is 2x elevated in NE Minnesota.

9. Overall Cancer Incidence by Race and Ethnicity in Minnesota and in the SEER Program, 1998-2002 Rate per 100,000 persons

10. Trends in Overall Cancer Incidence in Minnesota (1988-2004) and the SEER Program (1975-2004) Rate per 100,000 persons Year of Diagnosis Source: MCSS (October 2007) and SEER Cancer Statistics Review, 1974-2004. Rates are age-adjusted to the 2000 US population and are for all races combined. SEER registries cover ~10% of the US population.

11. Colorectal Cancer Incidence Trends in Minnesota Rate per 100,000 persons Average Percent Change in the Age-adjusted Rate: Urban Minnesota - 1.9% / year Rural Minnesota - 0.7% / year Year of Diagnosis Source: MCSS. Includes both in situ and invasive cancers. Urban residents live in 18 counties in Metropolitan Areas in the 2000 Census.

12. Mesothelioma Incidence Rates* among Males in Minnesota Regions and Six Largest Counties,1999-2003 Minnesota = 2.5 SEER** = 2.0 Significantly higher than state average Not significantly different from state average Significantly lower than state average Lakeof theWoods Kittson Roseau Northwest 2.4 Koochiching Marshall St. Louis Beltrami Pennington Polk Cook Northeast ClearWater Red Lake Lake Itasca 5.3 Mahnomen Norman Hubbard Cass Becker Clay Aitkin Wadena Crow Wing Carlton Ottertail West Central Wilkin County Rate Anoka * Dakota 4.7 Hennepin 2.4 Ramsey 3.0 St Louis 4.8 Washington * 3.1 Pine Central Todd Mille Lacs 2.4 Kanabec Grant Douglas Morrison Benton Stevens Pope Stearns Traverse Isanti Big Stone Sherburne Chisago Kandivohi Swift Anoka Wash-ing-ton Metro Meeker Wright Rates are per 100,000 persons, age-adjusted to the 2000 US population. Significance was determined by comparison of 95% confidence intervals. * Rates based on fewer than ten cases are not shown. **White males in SEER 9 Regions, 2000-2002, SEER public use file (November 2004). Ram- sey Chippewa Hennepin 2.7 Lac Qui Parle Carver McLeod Renville Scott Yellow Medicine Dakota Sibley Lincoln Lyon Redwood Le Sueur Rice Goodhue Southwest Southeast Nicollet South Central Wabasha 1.4 Brown Blue Earth Olmsted 1.8 Pipestone Murray Cottonwood Watonwan Waseca Steele Dodge Winona Freeborn Houston Rock Nobles Jackson Martin Faribault Mower Fillmore

13. Why does this matter? • The first step in solving a problem is a careful description of the problem. • Describe problem. • Devise an intervention. • Increase colorectal cancer screening in rural MN. • Increase American Indians’ awareness of cancer problem and how to reduce cancer risk. • Identify source(s) of asbestos exposure in NE Minnesota; ensure that people are no longer being exposed. • Monitor the results; if indicated, revise the intervention; repeat. • End result: Fewer people will die from cancer in Minnesota.

14. Provide perspective on perceived cancer excesses • It is as important to allay fears when the data support it as it is to identify problems and elevate the focus when the data support that. • Examples: • Possible breast cancer excess around Prairie Island • Hundreds of calls from concerned citizens

15. Requirements for research that involves patient contact • Commissioner of Health must approve research projects. • Researchers must demonstrate: • the required qualifications (education & experience) • sufficient scientific and social merit of proposed research • likelihood that research as proposed will provide answers • an adequate plan to protect the private information • A Scientific Peer Review Committee provides advice to the Commissioner of Health on these topics. • All research must also be approved by a federally approved Human Subjects Committee with appropriate jurisdiction.

16. Points relevant to the question at hand (1) • Relatives are contacted only when the patient is deceased or otherwise incapable of responding. • MCSS doesn’t know who the relatives are unless the patient, physician or death certificate provides that information. • Physician is the one who informs MCSS that a patient is “otherwise incapable of responding.”

17. Points relevant to the question at hand (2) • All patient participation in research is voluntary; per Minnesota law, at minimum, a Tennessen warning must be given. • Physician’s advice on the timing & appropriateness of contacting a patient is very important. • Physicians should know about studies because patients often turn to them them for advice about participation.

18. How could the law be changed? • Leave the statute “as is.” • Clarify that relatives can be contacted without the patient’s consent only if the patient is deceased or otherwise incapable of responding. • Replace requirement for physician consent with requirement for physician consultation.