April 18, 2012

Abdul R Shaikh, PhD, MHScProgram DirectorHealth Comm. and Informatics Research BranchDivision of Cancer Control and Population SciencesNational Cancer Instituteshaikhab@mail.nih.gov@abdulrshaikh

National Cancer Institute: Utilizing 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

Meeting the challenge of ‘Big Data’The availability of massive, rich datasets offers enormous potential for cancer prevention and control

Basic and Translational Science: - Exploratory & confirmatory research for understanding factors and

mechanisms influencing cancer risk & prognosis- Secondary use of health-related data- Educate, inform, and provide decision support for consumer and clinical health outcomes- Understand the role of behavioral and structural determinants of

population health- Commercialization pathways (Open Innovation challenges & SBIR)

Data Sources-SEER, HINTS, CPS-Tobacco, CLASS, CHIS, ATUS, Cancer Imaging Archive, QuitNowTXT library.

. 2010/2011 Open Innovation Challenges:

PARTICIPANTS: 2010: 7 registered teams – 2 winners2011: 26 registered teams – 4 semi-finalists – 2 winners

OUTCOMES: • Increasing the utility of research data for the non-research

community• Building an ecology of scientists, developers, and

entrepreneurs• Accelerate development and commercialization of consumer

HIT products to prevent cancer and other chronic diseases

Increasing the Usability of Public Data for Cancer Prevention & Control

Recent winners

LocalHealthData.org

. SBIR: Innovative Health IT for Broad Adoption by Healthcare Systems and Consumers (R44)

Purpose: - Accelerate development and commercialization of evidence-based consumer health IT products to prevent cancer and other chronic diseases, facilitate patient-provider communication, and improve disease outcomes.- Facilitate 3rd party (i.e., large business) partnerships early in the development process (funding priority for applicants that demonstrate upfront commitment)

Background: - Federal initiatives; consumer demand & commercial investment; NIH, AHRQ, NIST, and ONC interest; tied to COMPETES open innovation challenges

Technical Scope: - R44 Phase II and Fast Track applications (up to $1 million); Large business partner & LOI

Surveillance Epidemiology and End Results (SEER)

http://seer.cancer.gov/PopulationChildren to adults

MethodData collected from cancer registries that cover ~26% of the US

population; follow-up with individual cases until deathContent

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 2009;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

                      

PopulationAdults (18+)

Method2003, 2005: Random digit dial (RDD)2007: Dual frame/dual mode2012: Address frame/self-administered mail mode

ContentHealth communications trends and practices Cancer information access and usage Cancer risk perceptionMental models of cancer Health behaviorsNumeracy

Data2003 (n= 6,469); 2005 (n= 5,586); 2007 (n= 7,674); 2012 (n=3,956)*;

Note* Data available summer, 2012

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)

Linkage to outcome data (mortality and SEER data) through NLMS

http://class.cancer.gov/index.aspx

National Health Interview Survey (NHIS)http://www.cdc.gov/nchs/nhis.htmPopulation

Households, families, adults and childrenMethod

Face to face interviewContent

Cancer control supplements (1987, 1992, 2000, 2005, 2010):• Diet and nutrition• Physical activity• Cancer screening• HPV• Sun avoidance• Tobacco use and control• Cancer survivorship

Datan~40,000 households (~87,000 individuals)Initiated in 1957

California Health Interview Survey (CHIS)

PopulationAdult, adolescent and child questionnairesVery diverse racial/ethnic population

MethodTelephone survey (landline/cell phone) of all California counties

Content Health behaviors (Diet/drug use/sexual/sun safety)Health statusHealth conditions (asthma, diabetes etc.)Cancer history and preventionHealth insurance

Data 2001, 2003, 2005, 2007, 2009 data available ~40-50,000 respondents/survey

NoteMany latino and asian groups represented; oversamples of Koreans and VietnameseFielded in five languages: English, Spanish, Chinese, Vietnamese, and Korean

http://www.chis.ucla.edu

American Time Use Surveyhttp://www.bls.gov/tus/; http://riskfactor.cancer.gov/studies/atus.htmlPopulation

Adolescents/adults 15 and older Method

Self report telephone interview using 24 hour recallContent

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 yearData currently available: 2003-2009

NoteData files can be linked to Current Population Survey (CPS)

http://cancerimagingarchive.net

Other NCI data sources and toolsCancer Prevalence & Cost of Care: http://costprojections.cancer.gov

Cancer Trends Progress Report: http://progressreport.cancer.gov/

Health Disparities Calculator (HD*Calc): http://seer.cancer.gov/hdcalc/index.html

PopSciGrid Community Health Data Portal: http://1.usa.gov/L9ShpY

State Cancer Profiles: http://statecancerprofiles.cancer.gov/

Data Resource Contacts - NCI DCCPS

Audie Atienza (atienzaa@mail.nih.gov; Behavioral Research Program)

Eric J (Rocky) Feuer (feuerr@mail.nih.gov; Surveillance Research Program)

Richard Moser (moserr@mail.nih.gov; Behavioral Research Program)

Abdul R Shaikh (shaikhab@mail.nih.gov; @abdulrshaikh; Behavioral Research Program)