# Presentation: 139922

## NCI ADVOCATE’S SUPPORT FOR THE NCI COMMUNITY CANCER CENTERS PROGRAM

**NCI ADVOCATE’S SUPPORT FOR THE NCI COMMUNITY CANCER CENTERS PROGRAM**

- Beverly L. Laird, Ph.D. Vice Chair
- NCI Director’s Consumer Liaison Group
- June 25-26, 2007

## NCI OFFICE OF LIAISON ACTIVITIES

- The Office of Liaison Activities contains programs and services for the cancer consumer advocate community:
- NCI Director’s Consumer Liaison Group (DCLG)
- Consumer Advocates in Research and Related Activities (CARRA) Program
- Professional Organization Leadership Meetings
- Digest of Federal Cancer News: E-Newsletter
- Understanding NCI Teleconference Series
- Advocacy Outreach

## Director’s Consumer Liaison Group

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- Federal Advisory Committee of 16 consumer advocates
- Advise the NCI Director from viewpoint of the cancer survivor
- Recent initiatives:
*NCI Listens and Learns* website
*Listening and Learning Together: Building a Bridge of Trust* – first-ever patient advocacy summit held at NCI

## NCI Director’ s Charge to the DCLG

- _Eliminating cancer health disparities_ – adding the consumer advocates’ perspective  in planning  for efforts of the NCI to address the issues of eliminating cancer health disparities. DCLG liaisons with NCI’s Center to Reduce Cancer Health Disparities and other health disparities research programs.
- _Minority recruitment and patient outreach_ – translating for NCI, and bringing to NCI, the perspective of the cancer advocacy community.
- The DCLG is represented on the Clinical Trials Advisory Committee (CTAC) by DCLG member Col. (Ret.) James E. Williams, Jr. USA.
- _Cancer care delivery_ – participating in the NCI Community Cancer Centers Program (NCCCP) pilot as part of the group who advises and directs the program and providing ongoing feedback to the Director about the community realities of this pilot program.
- The DCLG is represented on the NCI Program Advisory Committee (NPAC) to the NCCCP by DCLG Member Dr. Beverly Laird.

## DCLG Members Across the U.S.

- Four New Members will begin in July 2007

## DCLG Member Organizations	

- American Cancer Society
- American Pain Foundation
- breastcancer.org
- Curesearch National Childhood Cancer Foundation
- Hope Through Grace, Inc.
- In My Sister's Care
- Kidney Cancer Association
- Lance Armstrong Foundation
- Leukemia & Lymphoma Society
- National Breast Cancer Coalition

- National Cervical Cancer Coalition
- National Patient Advocate Foundation
- Native People's Circle of Hope
- Patient Advocate Foundation
- Pennsylvania Prostate Cancer Coalition
- Susan G. Komen for the Cure
- Virginia Breast Cancer Foundation
- Yul Brynner Head and Neck Cancer Foundation

## DCLG Members

- _Ms. Margaret (Peg) Anthony_, South Carolina, South Carolina, Clinical experience, Lung cancer (co-survivor), Head & neck cancer, Oncology Nursing Society
- _Mr. William (Bill) Bro_, Illinois, Kidney cancer survivor, President & CEO, Kidney Cancer Foundation
- _Ms. Vernal Branch_, Virginia, Breast cancer survivor, Health educator, Sister Study recruiter, NBCC  & Komen
- _Dr. Yvette Colon_, Michigan, Ovarian cancer survivor, Oncology social work, American Pain Association
- _Ms. Lourie Campos_, California, Filipina cancer survivor, Community health partnerships, Young survivorship
- _Ms. Kelly L. Cotter_, Illinois, Childhood leukemia survivor, Young survivorship, Attorney
- _Ms. Nancy Davenport-Ennis_, Virginia, Breast cancer survivor, Head and neck cancer (co-survivor), Founder, Patient Advocate Foundation, Health Insurance Advocate Expertise
- _Dr. Grace Butler_, Texas, Colon cancer survivor, Professor Emeritus, University of Houston, Founder, Hope Through Grace, Inc., CARRA member

## DCLG Members	

- _Mr. Alan Kaye_, California, Founder, National Cervical Cancer Coalition, HPV education, Lung cancer (caregiver)
- _Ms. Mary Jackson-Scroggins_, Washington, D.C., Ovarian cancer survivor, Co-founder, In My Sister’s Care, Writer and editor
- _Ms. Sue Sumpter_, Oregon, Childhood cancer (parent), Candlelighter, Treatment side-effects
- _Dr. Marisa Weiss_, Pennsylvania, Oncologist, Founder, breastcancer.org, Founder, Living Beyond Breast Cancer, Prof. Of Survivorship Award, Komen
- _Ms. Celeste Whitewolf_, Oregon, Breast cancer survivor, Co-founder, Native People’s Circle of Hope, Medicine Bag Project, Native American Advisory Council, Komen
- _Col. (Ret.) James Williams, Jr_., Pennsylvania, Prostate cancer survivor, Board/advisory member of several prostate cancer organizations, DCLG representative on CTAC
- _Mr. Doug Ulman_, Texas, President, Lance Armstrong Foundation, Co-founder, Ulman Foundation, Cancer survivor, Young survivorship
- _Dr. Beverly Laird_, Alabama, Breast & endometrial cancer survivor, Public health, CARRA member, Advocates in peer review trainer (Komen, LAF, CARRA)

## What Advocates Can Do

- Help educate patients, the public, and providers
- Review communications
- Help allay fears
- Represent the voice of minorities and underserved populations
- Community outreach and education
- Assist with recruitment plans
- Review protocols
- _Build collaborative capacity through our existing networks and organizations_

## NCI CARRA Program – Involving Advocates

- 	Approximately 185 people from across the nation who have experience with cancer (i.e. patients, survivors, caregivers & family members)

- CARRA Members:
-  Participate in a wide range of activities
-  Represent the collective viewpoint of people affected by cancer
-  Provide critical insights and analysis that help translate  research advances more quickly and safely to patients
- and the broader public

## Examples of How CARRA Members Can Help You

- CARRA members can help pioneer your consumer collaboration, enhance current community partnerships, or serve as a resource to the advocates that currently contribute to your Center
- Participating on Institutional Review Boards and research committees
- Participating on patient advisory boards
- Promoting patient recruitment to clinical trials
- Fostering patient and family support programs
- Improving public image and consumer services (i.e., advertising, Web site design, facilities configuration, etc.)
- Educating the public, media, and officials about your activities and research advancements
- Reflecting, and providing outreach to, the diverse communities that you serve.

## Issues That Are Important to Consumer Advocates

- Clinical Trials
- Health Care Disparities
- Information Technology
- Biospecimens
- Quality of Care and Survivorship

## Clinical Trials Issues

- Consumer advocates would like to see
- Patient advocates on planning committees
- Advocate review of protocols and informed consent
- Expanded patient navigation support
- Increased outreach to community, especially minorities and those experiencing healthcare disparities – in a culturally sensitive manner
- Increased accruals (especially minorities)

## Health Care Disparities Issues

- Consumer advocates would like to see
- Increased access to more specialized services
- Advocates involved in teaching healthcare providers about cultural competency and sensitivity
- Well thought out plans to increase minority participation in research and health service
- Ways to address issues of the lack of health insurance

## Information Technology Issues

- Consumer advocates would like to see
- Careful implementation of Electronic Medical Records (EMR’s)
- Continued attention to issues of privacy and confidentiality

## Biospecimens Issues

- Consumer advocates would like to see
- Easy to understand communications about the importance of biospecimen collections
- Inclusion of advocates to help inform patients about the importance of biospecimen repositories

## Quality of Care & Survivorship Issues

- Consumer advocates would like to see
- Availability of risk assessment, including gene testing AND counseling and support
- Individualized survivorship plans
- Patient satisfaction surveys
- Increased referrals to hospice
- Inclusion of advocates to help promote hospice
- Increased attention to quality palliative care

## Quality of Care and Survivorship Issues

- Consumer advocates would like to see
- Free or low-cost transportation where needed
- Assistance with insurance claims and other paperwork issues
- Translators where needed
- Psychosocial services included as essential elements of quality of care
- Family support
- Nutritional counseling
- Relaxation/exercise classes
- Menopausal symptom support
- Fertility counseling
- Long-term sequelae followup support

## Quality of care and survivorship initiatives

- A multidisciplinary and integrated “dream team” would include *[thanks to Madeline Harris, R.N., UAB Interdisciplinary Breast Clinic]*

- Surgery
- Medicine
- Radiation oncology
- Radiology
- Pathology
- Nutrition
- Palliative care
- Social services
- Sports/rehab medicine
- Pastoral care
- Nursing
- Physical therapy

*Comfortable, adequate clinical space*
*Sufficient staff with competitive salary support*
*Navigation of patients through the system*
*Cutting-edge treatments*
*Patient-driven preferences *
*Risk assessment*

## Advocates and the NCCCP	

- Our members and OLA staff will compile site-specific information for your hospitals, listing contact information and resources available from our organizations and our network of organizations.
- We want to help reduce barriers to YOUR access to these resources that are provided at no cost to your patients or your hospitals.
- We ask that you consider us to be part of your resource team.
- We sincerely thank Dr. Niederhuber for inviting our participation in this exciting effort!
- And we thank you for allowing us to be a part of your success.

## Contacting DCLG and CARRA Staff	

- Office of Liaison Activities
- Barbara Guest (Executive Secretary to DCLG)
- (301) 496-0307
- _[guestb@MAIL.NIH.GOV](mailto:guestb@MAIL.NIH.GOV)__ _
- Elizabeth Nielson (CARRA Program Manager)
- (301) 451-3321
- _[neilsone@mail.nih.gov](mailto:neilsone@mail.nih.gov)_
- Website: _[http://](http://dclg.cancer.gov/)__[dclg.cancer.gov](http://dclg.cancer.gov/)_ 	        _[http://carra.cancer.gov](http://carra.cancer.gov/)_ 	        _[http://](http://ola.cancer.gov/)__[ola.cancer.gov](http://ola.cancer.gov/)_