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Richard P. Moser, PhD
Research Psychologist
Behavioral Research Program
Division of Cancer Control and Population Sciences
National Cancer Institute
moserr@mail.nih.gov
National Cancer Institute:
Utilizing Survey Data for Cancer
Prevention and Control
NCI: Established by congress in 1937, is the leading Federal agency and world’s
largest organization solely dedicated to cancer-related research, training, and
dissemination of information.
DCCPS: aims to reduce the risk, incidence, and deaths from cancer as well as
enhance the quality of life for cancer survivors. The Division conducts and
supports an integrated program of the highest quality
behavioral, epidemiologic, genetic, health services, and surveillance cancer
research.
“Much of the suffering and death from cancer could be prevented by more
systematic efforts to reduce tobacco use, improve diet and physical
activity, reduce obesity, and expand the use of established screening
tests. The American Cancer Society estimates that in 2011 about 171,600
cancer deaths will be caused by tobacco use alone. In addition, approximately
one-third of the 571,950 cancer deaths expected to occur in 2011 are
attributed to poor nutrition, physical inactivity, overweight, and obesity.”1
1. American Cancer Society. Cancer Prevention & Early Detection Facts & Figures
2011. Atlanta: American Cancer Society; 2011.
Multi-level peer
support, consumers/clinicians, information, monitoring
Decision support, care coordination, collaboration
Follow-up and decision support, care
coordination, patient engagement
Compliance, care coordination, collaboration, reminder
systems
Transition to 1o, surveillance, health promotion, end-of-
life
• Big Data To Knowledge
(BD2K) Initiative
• Facilitating Broad Use of
Biomedical Big Data
• Developing and Disseminating
Analysis Methods and
Software for Biomedical Big
Data
• Enhancing Training for
Biomedical Big Data
• Establishing Centers of
Excellence for Biomedical Big
Data
• Common Data Elements
(CDE) Site
• National Library of Medicine
http://www.nlm.nih.gov/cde/
Surveillance Epidemiology and End
Results (SEER)
http://seer.cancer.gov/Population
Children to adults
Method
Data collected from cancer registries that cover ~26% of the US
population; follow-up with individual cases until death
Content
Cancer incidence, prevalence, and survival data; cancer site, stage,
morphology, treatment; limited demographics (age, race/ethnicity,
region)
Data
100% of cancer cases in registries; Six million cases with ~350,000 added
each year; 1973 to 2010;
Note
Need specialized software to analyze (SEER*Stat or SEER*Prep)
downloaded from website;
Must sign user agreement to obtain; limited to research purposes;
Can be linked to Medicare data
Population
Non-institutionalized adults (18+)
Method
2003, 2005: Random digit dial (RDD)
2007: Dual frame/dual mode
2012-2014 (4 Cycles): Address frame/self-administered mail mode
Content
Health communications trends and practices
Cancer information access and usage
Cancer risk perception
Mental models of cancer
Health behaviors
Numeracy
Data
2003 (n= 6,469); 2005 (n= 5,586); 2008 (n= 7,674); 2012 Cycle 1 (n=3,956)
Note
* Cycle 2 data available summer, 2013; Data Users Conference October, 2013
*(pending approval)
http://hints.cancer.gov
http://riskfactor.cancer.gov/studies/tus-cps/
Population:
Adolescents/adults 15+ 1992-06; 18+ 2007-
Method: National HH address-based frame, 8 panels
Conducted every 3-4 years by Census for NCI
65% telephone (allows cell phone if preferred); 35% in-home
Translated into Spanish and 4 Asian languages
Content: Monitor, evaluate and conduct research on cigarette & other tobacco product usage
patterns; Cessation: attempts, intentions, & treatment ; Policy: work, home, “real” price, attitudes &
clinician advice
Data: ~240,000 U.S. respondents per cycle
Notes: National, state, sub-state estimates;
Health disparities (e.g. race/ethnicity; low SES, rural)
Economic aspects with CPS detailed occupational, & health disability data
Panel design links to other CPS data (e.g., ASEC, ATUS, Food Security, Internet Use)
Panel design allows for adding prospective Follow-Up (2002-03, 2010-2011)
Webinar September 17, 2013; Contact Julia Strasser for info: strasserj@mail.nih.gov
Linkage to outcome data (CMS, mortality and SEER data) through NLMS
http://class.cancer.gov/index.aspx
National Health Interview Survey
(NHIS)
http://www.cdc.gov/nchs/nhis.htm
Population
Households, families, adults and children
Method
Face to face interview
Content
• Supplements
• Cancer (1987, 1992, 2000, 2003, 2005, 2010)
• Immunization/vaccination usage (annual)
• CAM (2002, 2007; yoga/acupuncture/massage etc.)
• Arthritis (2002)
• Health care utilization (2011)
• Child mental health (2011)
Data
n~40,000 households (~87,000 individuals)
Initiated in 1957
California Health Interview
Survey
Population
Adult, adolescent and child questionnaires
Very diverse racial/ethnic population
Method
Telephone survey (landline/cell phone) of all California counties
Content
Health behaviors (Diet/drug use/sexual/sun safety)
Health status
Health conditions (asthma, diabetes etc.)
Cancer history and prevention
Health insurance
Data
2001, 2003, 2005, 2007, 2009 data available
~40-50,000 respondents/survey
Note
Many latino and asian groups represented; oversamples of Koreans and Vietnamese
Fielded in five languages: English, Spanish, Chinese, Vietnamese, and Korean
http://www.chis.ucla.edu
American Time Use Survey
http://www.bls.gov/tus/;
http://riskfactor.cancer.gov/studies/atus.html
Population
Adolescents/adults 15 and older
Method
Self report telephone interview using 24 hour recall
Content
Estimates of activities people do (work, childcare, socializing, exercising,
eating, educational, sports and religious activities), whom they were with,
and the time spent doing them by sex, age, educational attainment, labor
force status, and other characteristics, as well as by weekday and weekend
day.
Eating and health module.
Data
n ~ 13,000 per year
Data currently available: 2003-2011
Note
Data files can be linked to Current Population Survey (CPS)
http://meps.ahrq.gov/mepsweb/
Population
Nationally representative household survey, with additional follow-up of their
medical providers (doctors, hospitals, etc.), and separate survey of employers
across the United States about health insurance
Household Survey Method
Five in-person interviews
Content
Demographics, health status
Employment, insurance coverage and access to care
Health care utilization and expenditures
Data
Subset of NHIS with N= ~40,000/survey
New cohort initiated annually
Note
Has overlapping panel component
2011 most recently available data
Experiences with Cancer survey available in 2013
http://meps.ahrq.gov/mepsweb/
http://cancerimagingarchive.net
Other Federal Surveys
National Longitudinal Mortality Study
http://www.census.gov/nlms/
National Hospital Care Survey
http://www.cdc.gov/nchs/nhcs.htm
National Ambulatory Medical Care Survey
http://www.cdc.gov/nchs/about/major/ahcd/ahcd1.htm
Medicare Current Beneficiary Survey
http://www.cms.hhs.gov/MCBS/
Medicare Health Outcomes Survey
http://www.hosonline.org/
National Survey of Family Growth
http://www.cdc.gov/nchs/about/major/nsfg/nsfgbiblio.htm
Data Resources
• Univ. of Michigan Consortium for social research:
http://www.icpsr.umich.edu/
• NCHS Research Data Center:
http://www.cdc.gov/nchs/r&d/rdc.htm
• NCCOR Catalogue of Surveillance Systems
http://www.nccor.org/projects/catalogue/index.php
Data Resource Contacts - NCI DCCPS
Behavioral Research Program
Audie Atienza (atienzaa@mail.nih.gov)
Richard Moser (moserr@mail.nih.gov)
Surveillance Research Program
Eric J (Rocky) Feuer (feuerr@mail.nih.gov)

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Health Datapalooza 2013: Datalab - Rick Moser

  • 1. Richard P. Moser, PhD Research Psychologist Behavioral Research Program Division of Cancer Control and Population Sciences National Cancer Institute moserr@mail.nih.gov National Cancer Institute: Utilizing Survey Data for Cancer Prevention and Control
  • 2. NCI: Established by congress in 1937, is the leading Federal agency and world’s largest organization solely dedicated to cancer-related research, training, and dissemination of information. DCCPS: aims to reduce the risk, incidence, and deaths from cancer as well as enhance the quality of life for cancer survivors. The Division conducts and supports an integrated program of the highest quality behavioral, epidemiologic, genetic, health services, and surveillance cancer research. “Much of the suffering and death from cancer could be prevented by more systematic efforts to reduce tobacco use, improve diet and physical activity, reduce obesity, and expand the use of established screening tests. The American Cancer Society estimates that in 2011 about 171,600 cancer deaths will be caused by tobacco use alone. In addition, approximately one-third of the 571,950 cancer deaths expected to occur in 2011 are attributed to poor nutrition, physical inactivity, overweight, and obesity.”1 1. American Cancer Society. Cancer Prevention & Early Detection Facts & Figures 2011. Atlanta: American Cancer Society; 2011.
  • 3. Multi-level peer support, consumers/clinicians, information, monitoring Decision support, care coordination, collaboration Follow-up and decision support, care coordination, patient engagement Compliance, care coordination, collaboration, reminder systems Transition to 1o, surveillance, health promotion, end-of- life
  • 4. • Big Data To Knowledge (BD2K) Initiative • Facilitating Broad Use of Biomedical Big Data • Developing and Disseminating Analysis Methods and Software for Biomedical Big Data • Enhancing Training for Biomedical Big Data • Establishing Centers of Excellence for Biomedical Big Data • Common Data Elements (CDE) Site • National Library of Medicine http://www.nlm.nih.gov/cde/
  • 5. Surveillance Epidemiology and End Results (SEER) http://seer.cancer.gov/Population Children to adults Method Data collected from cancer registries that cover ~26% of the US population; follow-up with individual cases until death Content Cancer incidence, prevalence, and survival data; cancer site, stage, morphology, treatment; limited demographics (age, race/ethnicity, region) Data 100% of cancer cases in registries; Six million cases with ~350,000 added each year; 1973 to 2010; Note Need specialized software to analyze (SEER*Stat or SEER*Prep) downloaded from website; Must sign user agreement to obtain; limited to research purposes; Can be linked to Medicare data
  • 6. Population Non-institutionalized adults (18+) Method 2003, 2005: Random digit dial (RDD) 2007: Dual frame/dual mode 2012-2014 (4 Cycles): Address frame/self-administered mail mode Content Health communications trends and practices Cancer information access and usage Cancer risk perception Mental models of cancer Health behaviors Numeracy Data 2003 (n= 6,469); 2005 (n= 5,586); 2008 (n= 7,674); 2012 Cycle 1 (n=3,956) Note * Cycle 2 data available summer, 2013; Data Users Conference October, 2013 *(pending approval) http://hints.cancer.gov
  • 7. http://riskfactor.cancer.gov/studies/tus-cps/ Population: Adolescents/adults 15+ 1992-06; 18+ 2007- Method: National HH address-based frame, 8 panels Conducted every 3-4 years by Census for NCI 65% telephone (allows cell phone if preferred); 35% in-home Translated into Spanish and 4 Asian languages Content: Monitor, evaluate and conduct research on cigarette & other tobacco product usage patterns; Cessation: attempts, intentions, & treatment ; Policy: work, home, “real” price, attitudes & clinician advice Data: ~240,000 U.S. respondents per cycle Notes: National, state, sub-state estimates; Health disparities (e.g. race/ethnicity; low SES, rural) Economic aspects with CPS detailed occupational, & health disability data Panel design links to other CPS data (e.g., ASEC, ATUS, Food Security, Internet Use) Panel design allows for adding prospective Follow-Up (2002-03, 2010-2011) Webinar September 17, 2013; Contact Julia Strasser for info: strasserj@mail.nih.gov Linkage to outcome data (CMS, mortality and SEER data) through NLMS
  • 9. National Health Interview Survey (NHIS) http://www.cdc.gov/nchs/nhis.htm Population Households, families, adults and children Method Face to face interview Content • Supplements • Cancer (1987, 1992, 2000, 2003, 2005, 2010) • Immunization/vaccination usage (annual) • CAM (2002, 2007; yoga/acupuncture/massage etc.) • Arthritis (2002) • Health care utilization (2011) • Child mental health (2011) Data n~40,000 households (~87,000 individuals) Initiated in 1957
  • 10. California Health Interview Survey Population Adult, adolescent and child questionnaires Very diverse racial/ethnic population Method Telephone survey (landline/cell phone) of all California counties Content Health behaviors (Diet/drug use/sexual/sun safety) Health status Health conditions (asthma, diabetes etc.) Cancer history and prevention Health insurance Data 2001, 2003, 2005, 2007, 2009 data available ~40-50,000 respondents/survey Note Many latino and asian groups represented; oversamples of Koreans and Vietnamese Fielded in five languages: English, Spanish, Chinese, Vietnamese, and Korean http://www.chis.ucla.edu
  • 11. American Time Use Survey http://www.bls.gov/tus/; http://riskfactor.cancer.gov/studies/atus.html Population Adolescents/adults 15 and older Method Self report telephone interview using 24 hour recall Content Estimates of activities people do (work, childcare, socializing, exercising, eating, educational, sports and religious activities), whom they were with, and the time spent doing them by sex, age, educational attainment, labor force status, and other characteristics, as well as by weekday and weekend day. Eating and health module. Data n ~ 13,000 per year Data currently available: 2003-2011 Note Data files can be linked to Current Population Survey (CPS)
  • 12. http://meps.ahrq.gov/mepsweb/ Population Nationally representative household survey, with additional follow-up of their medical providers (doctors, hospitals, etc.), and separate survey of employers across the United States about health insurance Household Survey Method Five in-person interviews Content Demographics, health status Employment, insurance coverage and access to care Health care utilization and expenditures Data Subset of NHIS with N= ~40,000/survey New cohort initiated annually Note Has overlapping panel component 2011 most recently available data Experiences with Cancer survey available in 2013 http://meps.ahrq.gov/mepsweb/
  • 14. Other Federal Surveys National Longitudinal Mortality Study http://www.census.gov/nlms/ National Hospital Care Survey http://www.cdc.gov/nchs/nhcs.htm National Ambulatory Medical Care Survey http://www.cdc.gov/nchs/about/major/ahcd/ahcd1.htm Medicare Current Beneficiary Survey http://www.cms.hhs.gov/MCBS/ Medicare Health Outcomes Survey http://www.hosonline.org/ National Survey of Family Growth http://www.cdc.gov/nchs/about/major/nsfg/nsfgbiblio.htm
  • 15. Data Resources • Univ. of Michigan Consortium for social research: http://www.icpsr.umich.edu/ • NCHS Research Data Center: http://www.cdc.gov/nchs/r&d/rdc.htm • NCCOR Catalogue of Surveillance Systems http://www.nccor.org/projects/catalogue/index.php
  • 16. Data Resource Contacts - NCI DCCPS Behavioral Research Program Audie Atienza (atienzaa@mail.nih.gov) Richard Moser (moserr@mail.nih.gov) Surveillance Research Program Eric J (Rocky) Feuer (feuerr@mail.nih.gov)