Mission. The mission of the SCCA is: to reduce the impact of cancer on ALL people in South Carolina.

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1 Steve Lovelace, Executive Director SCOS Fall Membership Conference August 17, 2012

2 History Founded in 2003, the South Carolina Cancer Alliance (SCCA) is a non-profit organization Voluntary association that offers membership to organizations and individuals interested in working together to reduce the state's cancer burden

3 Mission The mission of the SCCA is: to reduce the impact of cancer on ALL people in South Carolina.

4 SCCA The major charge of the SCCA is to implement the South Carolina Cancer Plan Cancer plan is the state s central blueprint for cancer prevention and control planning

5 Cancer Plan Focus Health Advocacy and Policy Women s Cancers Health Disparities Colorectal Cancer Capacity-Building Tobacco-Related Cancers Cancer Research Prostate Cancer Primary Cancer Prevention Skin Cancer Patient Care Other Cancers Survivorship Prevention

6 The SCCA provides the cancer control community with opportunities to: Build new partnerships Improve coordination of resources Develop & share innovative strategies Reduce unnecessary duplication of efforts

7 Funding Projects The South Carolina Cancer Alliance provides funding and support for cancer plan implementation projects every year Over 50 grants totaling more than $500,000 have been funded

8 Examples of SCCA Cancer Plan Implementation Projects Cancer Education Guide (CEG) Colorectal Cancer (CRC) awareness campaign CRC screening Families Eating Smart and Moving More Mammography registry project Prostate cancer control projects African American prostate cancer education project Smoke-free initiatives including Rage Against the Haze The Community Compass Project Spartanburg Joint Use Policies Reducing Health Disparities by Improving Access to Healthy Food Patient-centered standards of care

9 PLANNING TO MEET THE ACS COMMISSION ON CANCER PATIENT-CENTERED STANDARDS OF CARE Presenter: Kathleen Cartmell, SC Cancer Alliance Patient & Survivor Workgroup (MUSC HCC)

10 ACSCoC Patient-Centered Standards ACSCoC requires all cancer centers to develop patient-centered standards of care By 2015: Survivor care plans, psychosocial distress screening, patient navigation Already: genetic screening/services, palliative care, etc. These services will be better if we engage partners statewide to leverage resources to build/share the best programs possible

11 Key Partners ACSCoC Nestor Esnaola/Ramsey Camp, SC Liaison MD State cancer centers South Carolina Cancer Alliance Steve Lovelace, Executive Director SC American Cancer Society Ashley Cashon, SC Mission Director Public health departments, academic medical/research centers, cancer advocacy groups and others

12 Survey of ACSCoC Cancer Centers in SC A Report on Selected Patient-Centered Standards of Care

13 Survey Methods Surveyed all 17 ACSCoC cancer center systems request with survey monkey link Reminder in 2 weeks; personal call 2 weeks later Topics included Patient navigation, survivor care plans, psychosocial distress screening, genetic services, palliative care Cancer centers are required to develop services in next few years Also priorities in new state cancer plan

14 17 ACOS Cancer Centers/Systems in SC Anderson AnMed Health Beaufort Beaufort Memorial Hospital Charleston Medical University of South Carolina Roper Hospital Ralph H. Johnson VA Medical Center Trident Medical Center Bon Secours St. Francis Health System Columbia Palmetto Health Cancer Centers William Jennings Bryan Dorn VA Medical Center Lexington Medical Center Florence McLeod Regional Medical Center Greenville Greenville Hospital System Greenwood Self Regional Healthcare Myrtle Beach Grand Strand Regional Medical Center Orangeburg Regional Medical Center of Orangeburg/Calhoun Rock Hill Piedmont Medical Center Spartanburg Spartanburg Regional Medical Center

15 Survey Results Response rate = 94%

16 Patient Navigation ACSCoC Standard 3.1: Patient navigation services are provided either on site or by referral or in partnership with local or national organizations.

17 Patient Navigation Services (N=16) Survey Item Categories % Patient navigation service Cancer types served* Type of navigator Points of assistance* Regularly available Available for some patients Not available Breast Thoracic Gastro-intestinal Genitourinary Head & neck All other Professional navigator Lay navigator Other (ACS, Psych major) Screening Diagnostics Treatment Post-Treatment * Percents do not equal 100% because respondents had option to check all that apply 44% 44% 13% 63% 44% 44% 38% 38% <19% 75% 6% 19% 56% 75% 81% 69%

18 Psychosocial Distress Screening ACSCoC Standard 3.2: The cancer committee develops and implements a process to assess and address the psychosocial distress of patients with cancer.

19 Psychosocial Distress Screening (N=16) Survey Item Categories % Distress screening Routinely conducted Not routine/referred as needed Not conducted 31% 56% 13% Point of distress screening* Distress screening tool* Initial visit At diagnosis Start of treatment End of treatment Long term follow up Recurrence Incurable End of life discussion NCCN Thermometer POMs Reported no tool, unknown or informal assessment 44% 19% 25% 13% 13% 19% 19% 25% 25% 6% 69% * Percents do not equal 100% because respondents had option to check all that apply

20 Survivorship Care Planning ACSCoC Standard 3.3: Provide a comprehensive treatment summary and follow up plan to patients completing treatment.

21 Survivorship Care Planning Extent to which patients receive info in written care plan: Patient diagnosis information (n=15) Patient treatment details (n=15) Appropriate schedule for follow-up visits/tests (n=14) Potential long-term and late treatment effects (n=15) Advice on important lifestyle issues (ie. physical activity, smoking and diet) (n=15) Never / Rarely Sometimes Very Often/ Always 47% 13% 40% 53% 7% 40% 36% 7% 57% 40% 20% 40% 33% 27% 40% Symptoms to watch (n=15) 40% 7% 53% List of support resources (n=15) 33% 27% 40%

22 Survivorship Care Planning (n=16) Survey Item Categories % Type of Survivor Care Plan* Designated Survivor Care Planning Staff NCCN Survivor Care Plan Journey Forward LiveStrong Care Plan ASCO Treatment Plan/Summary Star Survivorship Cancer Center Developed None Yes No 6% 13% 6% 0% 6% 6% 69% 19% 81% * Percents do not equal 100% because respondents had option to check all that apply; 3 sites noted they will soon start utilizing a care plan and 2 plans were noted: ASCO Plan and Ejuicare Star Survivorship

23 Genetic Services ACSCoC Standard 2.3: Risk assessment and genetic testing and counseling are provided either on site or by referral, by a qualified genetics professional.

24 Genetic Services (n=16) Survey Item Categories % Risk assessment for patients by a qualified professional* Yes, systematically provided across cancer center Not systematic provided across cancer center; but available to some patients No, not generally provided 38% 44% 19% Genetic counseling services by a qualified professional* Yes, systematically provided across cancer center Not systematic provided across cancer center; but available to some patients No, not generally provided 44% 38% 19%

25 Palliative Care ACSCoC Standard 2.4: Palliative care services are provided either on-site or by referral.

26 Palliative Care Services Availability of palliative care resources Currently active palliative care program (n=16) Not Available Available by Referral Available on Site 6% 38% 56% At least one palliative care physician (n=16) At least one palliative care nurse (n=16) Inpatient consultation team (n=16) 13% 31% 56% 13% 38% 50% 31% 25% 44% Outpatient clinic (n=15) 73% 7% 20% Dedicated palliative care beds (n=16) 50% 6% 44% Hospice program (n=15) 7% 53% 40%

27 Summary of Survey Results There is enormous potential for ACSCoC cancer centers, SC Cancer Alliance and ACS to partner to develop/share the highest quality programs for patients/survivors The survey provides baseline data for: Identifying gaps in services and systems Measuring our success Advocating for needed grants and other resources

28 Next Steps Statewide Partnership Project to develop, implement and evaluate a statewide training and technical assistance model Project Coordination: SCCA Patient and Survivor Workgroup Partners: ACSCoC cancer centers, SCCA, American Cancer Society, MUSC HCC

29 Project Purpose To enhance patient access to 5 key services genetic assessment/testing psychosocial distress screening patient navigation survivorship care planning palliative care

30 Project Components Develop and pilot test toolkit Organize a statewide evidence academy Structured technical assistance and co-learning Follow up statewide evidence academy Finalize toolkit/blog Disseminate project results

31 Next Steps in the Planning Process Request for ACSCoC Partners 1+ representatives from each cancer center on SCCA Patient/Survivor Workgroup Someone with institutional authority Sharing of tools/templates

32 Summary Bringing people together who ought to be working together Seeking to enhance the effectiveness of programs rather than create, duplicate or replace services provided by others Providing tools, information, and expertise that enhance effectiveness of members Providing focus & mechanism for addressing issues outside of the scope of any one group Leadership Partnership Integration

33 CONTACT INFORMATION South Carolina Cancer Alliance Steve Lovelace, Executive Director: Kathleen Cartmell, SC Cancer Alliance Patient & Survivor Workgroup (MUSC HCC) Thank you!