1. Final Report: Scoping Project on Environmental Determinants of Cancer in Appalachia Susan West Marmagas, MPH Consultant, Appalachian Community Cancer Network (based at Virginia Tech) ACCN Steering Committee Meeting May 7, 2008

2. Presentation Summary Purpose, goals and objectives Purpose, goals and objectives Scope of the project Scope of the project Main sources of information – UMass Lowell summary, primary literature and key informant interviews Main sources of information – UMass Lowell summary, primary literature and key informant interviews Findings – Strongest Links for Consideration Findings – Strongest Links for Consideration Findings – Differing Perceptions of Risk Findings – Differing Perceptions of Risk Findings – Key Activities in the Region Findings – Key Activities in the Region Recommendations Recommendations

3. Purpose Present an internal review of the background needed for the ACCN to determine how it might choose to move forward in addressing possible environmental determinants of cancer in Appalachia

4. Goals Identify known environmental risk factors that may explain or contribute to the incidence in cancer in Appalachia Identify known environmental risk factors that may explain or contribute to the incidence in cancer in Appalachia Assess the interest, assets, and challenges of the 5 institutions, and related organizations, that comprise ACCN Assess the interest, assets, and challenges of the 5 institutions, and related organizations, that comprise ACCN Make recommendations for region-wide projects Make recommendations for region-wide projects

5. Objectives Create a working matrix of known cancers and known/suspected agents that may explain or contribute to cancer incidence in Appalachia (pulled extensively from UMass Lowell work) Create a working matrix of known cancers and known/suspected agents that may explain or contribute to cancer incidence in Appalachia (pulled extensively from UMass Lowell work) Identify challenges to undertaking such assessments/evaluations in Appalachia Identify challenges to undertaking such assessments/evaluations in Appalachia Perform a gap analysis of the 5 institutions of ACCN to determine assets and challenges Perform a gap analysis of the 5 institutions of ACCN to determine assets and challenges Present possible roles for ACCN Present possible roles for ACCN Present possible region-wide projects for which ACCN could seek further funding Present possible region-wide projects for which ACCN could seek further funding

6. Scope of this Scoping Report Responds to interest in ACCN to consider the environment as part of the community-based work around cancer and health disparities Responds to interest in ACCN to consider the environment as part of the community-based work around cancer and health disparities Offers an internal review of possible environment- cancer connections for ACCN consideration Offers an internal review of possible environment- cancer connections for ACCN consideration Provides a snap shot of perspectives of key informants from across five states in Appalachia Provides a snap shot of perspectives of key informants from across five states in Appalachia Identifies challenges to undertaking this area of investigation Identifies challenges to undertaking this area of investigation Offers choices for ACCN to consider for further work on this intersection Offers choices for ACCN to consider for further work on this intersection

7. Outside the Scope Thorough data analysis of cancer data and environmental risk factor data by state and across the region Thorough data analysis of cancer data and environmental risk factor data by state and across the region Review of state cancer registry data Review of state cancer registry data GIS mapping of data in region GIS mapping of data in region Conclusive recommendations on the environmental agents and cancers to be addressed Conclusive recommendations on the environmental agents and cancers to be addressed The entire geographical area of Appalachia (only focused on WV, KY, OH, PA and VA The entire geographical area of Appalachia (only focused on WV, KY, OH, PA and VA

8. Challenges/Changes in Scope Expansive undertaking; continually narrowing scope in order to produce credible findings and recommendations Expansive undertaking; continually narrowing scope in order to produce credible findings and recommendations Controversy exists within the scientific community about strength of associations Controversy exists within the scientific community about strength of associations Additional data analysis (beyond scope) is needed (i.e. cancer registries, etc…) Additional data analysis (beyond scope) is needed (i.e. cancer registries, etc…) Some concern within ACCN/region about what we will conclude and what we are proposing Some concern within ACCN/region about what we will conclude and what we are proposing

9. Methods Review summary documents on cancer and environment Review summary documents on cancer and environment Review primary literature of cancer and environment in Appalachia Review primary literature of cancer and environment in Appalachia Interview key informants in region at academic institutions, community coalitions, government, non- profit organizations Interview key informants in region at academic institutions, community coalitions, government, non- profit organizations Interview key informants who are experts in cancer and environment both in and outside the region Interview key informants who are experts in cancer and environment both in and outside the region Propose an approach and possible region-wide projects for consideration Propose an approach and possible region-wide projects for consideration

10. Resource Documents Reviewed NCI-NIEHS report on Cancer and the Environment (2004) NCI-NIEHS report on Cancer and the Environment (2004) U Mass Lowell report U Mass Lowell report Toxicant Database from the Collaborative on Health and the Environment Toxicant Database from the Collaborative on Health and the Environment Reports from national cancer, public health, and environmental organizations Reports from national cancer, public health, and environmental organizations MASS HEIS mapping project (Silent Spring Institute) MASS HEIS mapping project (Silent Spring Institute) Medline/Pub-med searches of primary literature Medline/Pub-med searches of primary literature Key informant interviews Key informant interviews Other regional reports Other regional reports

11. Findings – Strongest Determinants Recommended environmental determinants for considerations based on: Recommended environmental determinants for considerations based on: Priority Cancers for ACCN (Lung has the strongest environmental connection) Priority Cancers for ACCN (Lung has the strongest environmental connection) U Mass Lowell Summary based on IARC and epidemiology studies (2007) U Mass Lowell Summary based on IARC and epidemiology studies (2007) Studies already underway in Appalachia Studies already underway in Appalachia Community Perspectives Community Perspectives

12. Findings – Strongest Determinants Tobacco (both active and passive) and Cancer Tobacco (both active and passive) and Cancer Air Pollution and Lung Cancer Air Pollution and Lung Cancer Ground/Drinking Water Contamination and Cancers, including Digestive Cancers Ground/Drinking Water Contamination and Cancers, including Digestive Cancers Site-Specific Contamination (i.e. PFOA C8 Plant) Site-Specific Contamination (i.e. PFOA C8 Plant) **Vital Need for Data Integration Across the Region**

13. Findings – Differing Perceptions of Risk Differing risk perception at the heart of some of the challenges of addressing this issue Differing risk perception at the heart of some of the challenges of addressing this issue Informational interviews clearly demonstrated differing perceptions Informational interviews clearly demonstrated differing perceptions Any risk communication tools and strategies need to be based on better understanding of risk perceptions Any risk communication tools and strategies need to be based on better understanding of risk perceptions Recommended for further study Recommended for further study

14. Findings – Key Activities in Region Environmental Exposure Database Development – ETSU, 2003 Environmental Exposure Database Development – ETSU, 2003 Data Assessment of Coal Mining and Lung Cancer – WVU, 2008 Data Assessment of Coal Mining and Lung Cancer – WVU, 2008 Planning Cumulative Risk Assessment – Ohio State, 2007 Planning Cumulative Risk Assessment – Ohio State, 2007 Health Study in Parkersburg, WV – West Virginia, 2006-07 Health Study in Parkersburg, WV – West Virginia, 2006-07 Groundwater Study in Martin County, Kentucky – Eastern Kentucky University -- 2001 Groundwater Study in Martin County, Kentucky – Eastern Kentucky University -- 2001 Economic Geography of Energy Production – Penn State – 2005-7 Economic Geography of Energy Production – Penn State – 2005-7 Strong Interest/Experience in Environmental Epidemiology -- Claudia Hopenhayn – University of Kentucky Strong Interest/Experience in Environmental Epidemiology -- Claudia Hopenhayn – University of Kentucky

15. Possible Roles for ACCN Convene cross-institutional discussions between researchers and/or between researchers and key ACCN stakeholders Convene cross-institutional discussions between researchers and/or between researchers and key ACCN stakeholders Evaluate the perception of risks in the region and make recommendations on risk communication strategies Evaluate the perception of risks in the region and make recommendations on risk communication strategies Encourage region-wide data analysis and tracking Encourage region-wide data analysis and tracking Recommend further scientific research projects that could be conducted in Appalachia Recommend further scientific research projects that could be conducted in Appalachia Integrate environmental risk communication messages into existing ACCN outreach efforts Integrate environmental risk communication messages into existing ACCN outreach efforts

16. Possible Region Wide Projects Cross-institution discussion forums Cross-institution discussion forums Perception of Risk Study Perception of Risk Study Environmental public health tracking in Appalachia -- data analysis, integration of environment and cancer data, GIS mapping Environmental public health tracking in Appalachia -- data analysis, integration of environment and cancer data, GIS mapping Community assessment tools Community assessment tools Collaborative research study options Collaborative research study options Risk communication materials for communities Risk communication materials for communities

17. Discussion Forums Could ACCN create discussion forum between researchers in the region? Could be done through a series of conference calls Could ACCN create discussion forum between researchers in the region? Could be done through a series of conference calls Might ACCN want to hold a series of conference calls for researchers to present and discuss findings with key ACCN stakeholders? Might ACCN want to hold a series of conference calls for researchers to present and discuss findings with key ACCN stakeholders? Might ACCN want to create a discussion group to brainstorm and plan for region-wide collaborative projects? Might ACCN want to create a discussion group to brainstorm and plan for region-wide collaborative projects?

18. Perception of Risk Study One of the biggest challenges is the difference in the perceptions of environmental determinants of cancer in Appalachia One of the biggest challenges is the difference in the perceptions of environmental determinants of cancer in Appalachia Without an in-depth look at perceptions, and follow-on discussion about how we address them, any effort might easily fail, falsely raise expections or create backlash Without an in-depth look at perceptions, and follow-on discussion about how we address them, any effort might easily fail, falsely raise expections or create backlash Perception is reality Perception is reality Individuals have agreed to serve on advisory group Individuals have agreed to serve on advisory group

19. Tracking and Data Integration Problem: Lack of data analysis within each state and across region looking at cancer endpoints and environmental risk factors Proposed Project: Use model of environmental health tracking to undertake region-wide effort to identify data sources, integrate existing data, use GIS to map data, identify gaps in data and propose ways to collect missing data Models for review: CDC’s Environmental Health Tracking program and pilot sites; MASS HEIS mapping effort

20. Community Assessment Tools NACCHO’s PACE EH NACCHO’s PACE EH CDC/EPA joint MOU and funding of pilot projects CDC/EPA joint MOU and funding of pilot projects Adapt community assessment tools for Appalachian communities Adapt community assessment tools for Appalachian communities Are community assessments already taking place; could we integrate environmental health components into what exists? Are community assessments already taking place; could we integrate environmental health components into what exists?

21. Collaborative Research Options Data Assessment (compare environment and cancer data) Data Assessment (compare environment and cancer data) Site-specific Health Studies Site-specific Health Studies Epidemiology Studies Epidemiology Studies Geography/Sociology Studies Geography/Sociology Studies

22. Risk Communication Efforts Use risk perception findings to develop new Community Outreach Tools Use risk perception findings to develop new Community Outreach Tools Develop component of ACCN materials to focus on environmental health considerations Develop component of ACCN materials to focus on environmental health considerations Develop white papers on particular cancers or environmental determinants of concern Develop white papers on particular cancers or environmental determinants of concern Create an advisory group from key informants to ensure credibility Create an advisory group from key informants to ensure credibility