Cancer Patient Navigators of Georgia
GASCO Membership information
Patient Navigators
ASCO University

Survey Results

Dates: Survey sent out May 6; Deadline June 30
Number of Respondents:  80
Sponsors: Georgia Society for Clinical Oncology (GASCO) and Georgia Cancer Coalition (GCC)

ABOUT THOSE WHO RESPONDED

Geographic: Respondents were from 25 cities representing all the Regional Cancer Coalitions divisions in the State of Georgia, and an additional eight counties outside of those regions. The largest number of respondents was from Atlanta (30%) and Savannah (12.5%), and Rome (7.5%). Others with 5% each are: Albany, Athens, Augusta, and Macon.

Position Funding:  (73 responses)
97.3%- paid; 2.7%- voluntary

Of those paid: (21 responses, some indicating more than one source of funding)

  • 19.0%- funded by their organization.
  • 33.3%- other, including: grants, Avon Foundation, regional cancer coalition, organizational donation, paid employee of a physician practice
  • 33.3%- funded by ACS
  • 28.6%- funded by private donations

Education: (41 responses)

  • 65.9%- RNs
  • 4.9%- OCNs
  • 2.4%- Social Workers
  • 26.8%- others, to include - MPH, RD, RT, MDiv, PhD, MBA,  BA, BS, BS, MD…also, teachers, medical assistant, psychology degree, MEd/counseling, Survivor with corporate management experience, navigator training programs

 

Professional Organizations: (67 responses: 71.6%- belong to one; 28.4%- do not belong to one)
Specific organization membership: 44 responses, some with several memberships, to include:

 

  • 21- Oncology Nursing Society (national & local chapters)
  •   6- National Association of Social Workers
  •   4- Association of Oncology Social Work
  •   3- National Coalition of Oncology Nurse Navigators
  •   2- ACS
  •   2- GASCO
  •   2-Georgia Nursing Association
  •   2- Association of Community Cancer Centers
  •   2- Association of Cancer Executives
  • Others: ANA, APHA, ARRT, ASRT, ATS, CMAP, HMA, OCN, NCBC, SOPHE, RCP, dietary associations, Sisters by Choice, International Assn of Administrative Professionals, etc.

Years Experience: (65 responses, not limited to experience in patient navigator role)
Average/Mean- 15.9 years; Median- 13 years; Mode- 10 years

Work tied to Cancer Patients: (60 responses)

  • 86.7%- totally cancer patients
  • 10%- spend 75% of their time
  • 1.7%- half of their time
  • 1.7%- spend 25% or less of their time with cancer patients

ABOUT THEIR ORGANIZATIONS                

Specializing in Specific types of cancer: (50 responses, some indicating more than one specialization)

  • 44%- specialize in breast cancer
  • 42%- no specialization
  • 10%- other: including prostate, gynecologic, skin, and blood cancers
  • 6%- general cancer
  • 4%- specialize in lung cancer
  • 4%- specialize in colorectal cancer

 

Information being collected/tracked: (54 responses, in order of largest response; many with multiple items)

 

  • Numbers of contacts, patients seen, services given
  • Collecting demographics (age/gender/race/cancer site)
  • Tracking referrals (date/agency/patterns)
  • Tumor/Cancer Registry tracking data
  • Patient Satisfaction
  • Dates of procedures/time spent with patient
  • Tracking time from screening to diagnosis to treatment
  • Clinical Trials
  • Other responses: outcomes, treatments, patient compliance, patient needs, changes knowledge/attitude/behavior

Cancer Patient Navigation Functions: (80 responses, in order of largest response; no limit on number individual could check)

  • Connect patients with resources and support systems (97.5%)
  • Help patients identify and use appropriate social services/community resources (96.3%)
  • Engage in community outreach and education (93.8%)
  • Help to decrease patients’ anxiety and fear (93.8%)
  • Help patients identify and access financial services to pay for health care (90%)
  • Facilitate interaction and communication with health care staff and providers (87.5%)
  • Provide necessary education to the patient/family regarding treatment plan/options (83.8%)
  • Assess a newly diagnosed patient’s psychosocial needs (75%)
  • Help patients arrive at scheduled appointments on time and prepared (68.8%)
  • Streamline appointments and paperwork (66.3%)
  • Assist patients in meeting their spiritual needs (61.3%)
  • Develop a care plan to address individual needs (60%)
  • Track interventions and outcomes (60%)
  • Notify individuals of clinical trails; facilitating enrollment upon request (42.5%)
  • Discuss tissue banking (26.3%)
  • Other (16.3%) – to include support groups; early detection/screening; financial assistance and counseling; interpreter for Spanish-speaking clients; survivorship classes; complementary treatment education; develop Survivorship Care Plans; attend patient surgeries

 

Defining Patient Navigation:  Additional functions mentioned in respondents organizational definitions of cancer patient navigation include:

 

  • Facilitating health/medical care access
  • Connecting patients/families with medical, financial, psychosocial, spiritual resources & support
  • Providing a patient-centered, outcome-focused process
  • Diminishing barriers
  • Smoothing the journey across the continuum of care
  • Advocating, Coordinating Care and Resources, Solving Problems, Educating, Serving as Liaison
  • Offering the empathy of a survivor; Listening; Peer-to-peer support
  • Helping patients/families understand processes, expectations, realities
  • Providing continuity of care
  • Offering community and faith-based outreach
  • Addressing prevention
  • Recruiting patients for clinical trials
  • Assuring optimal quality care is provided for the patient
  • Discussing plans upon discharge from hospital: community resources, financial assistance
  • Helping patients locate information, formulating questions to ask doctor
  • Providing support with day-to-day concerns: transportation, lodging, local assistance
  • Serving as the single point of contact
  • Supporting the family
  • Assuring seamless, personalized care

A GEORGIA CANCER PATIENT NAVIGATOR ORGANIZATION

Interest in joining/participating in a Cancer Patient Navigation organization in Georgia:
(63 responses) 100%- Yes; 0%- No

Interest in attending one-day conference: (71 responses)    95.8%-Yes; 4.2%- No

Ideal conference length: (40 responses):

  • 45% said 1 day
  • 30% said ½ day
  • 12.5% said 1-2 days
  • 7.5% said 2 days
  • 5% said more than 2 days.

Interest in networking activities: (63 responses) 92.1%- Yes; 7.9%- No 

Issues respondents would like the Georgia Cancer Patient Navigator organization to address: (68 responses, in order of greatest interest; no limit on number individual could check)

  • Share information on community resources (89.7%)
  • Ensure all newly diagnosed cancer patients & caregivers have access to navigation (86.8%)
  • Promote best practices (79.4%)
  • Address quality of care issues (77.9%)
  • Reduce barriers to care (77.9%)
  • Increase awareness of Oncology Navigator role (76.5%)
  • Offer continuing education (75%)
  • Develop standards/principles/measurements for patient navigation (73.5%)
  • Reduce health disparities in Georgia (72.1%)
  • Promote development/expansion of Patient Navigation programs (72.1%)
  • Use Information Technology to provide support for navigators (64.7%)
  • Share outcomes measures which document return on investment (63.2%)
  • Promote collegiality through supportive network (61.8%)
  • Ensure sustainability of patient navigation programs (58.8%)
  • Embrace mission of Georgia’s Comprehensive Cancer Control Plan (57.4%)
  • Promote/participate in patient navigation research (54.4%)
  • Promote availability of Clinical Trials (51.5%)
  • Other (10.3%) – foster support groups, legislation in favor of reimbursement for navigation services, spiritual support, memorial services, diversity, financial services, etc.

Suggested Program contents/speaker/resource information needed

 Topics mentioned most: 

  • Networking          
  • Financial resources/assistance
  • Data collection tools/methods
  • Follow-up care
  • Metrics/Patient Tracking
  • Clinical Trial promotion/access
  • Cancer Research
  • Available resources
  • Models/Best practices in Patient Navigation (guidelines/protocols)
  • Support for Patient Navigation program among physicians/staff
  • Access/Entry into system
  • Supportive care (psychosocial, dietary, sexuality, survivorship)

 

Suggested speakers

 

    • Dr. Harold Freeman
    • Jane Clark, RN
    • Rep Hilda Solis (CA)
    • Dawn Satterfield/CDC
    • Dr. Nanette Turner/Mercer
    • CHAN representative
    • Erin Hernandez/Blue Ridge AHEC
    • Christiana Care in NJ - Panel/Group on how Navigation works in their organization
    • Judi Kneece
    • Cheryl Kish, Georgia College & State University

OTHER COMMENTS/THOUGHTS & IDEAS ABOUT PATIENT NAVIGATION IN GA  

The bulk of comments are praise: this is a wonderful initiative, long overdue, invaluable.
Some important concerns/issues that are raised include:

  • There are many different types of individuals in this role. The role of the navigator and the definition of the title vary so widely. We need to determine how to avoid “turf” wars.
  • Patient navigators are important as “physician extenders.”
  • The ongoing needs of cancer patients are extensive; sharing this role would be of great advantage to the patient and caregivers.
  • Navigation should include marginalized populations-- limited English proficient; undocumented; the poor – who have additional barriers.
  • We exist only to care for the patient.
  • Networking and educational opportunities specific to oncology navigation have been difficult to find in some areas and a number of navigators work independently outside of a facility. An organization would be a welcome source of both.
  • Request for communication classes on subjects such as delivering the initial diagnosis, introducing clinical trials and when to begin to initiate dialogue about palliative care.
  • The value of having cancer survivors involved in the navigation process
  • The need for funding for navigation projects for all types of cancer patients, especially within the same cancer center. The patients do perceive a disparity in circumstances when this is not the case.
  • The roles and patient communication parameters need to be clearly defined and appropriate training provided when navigation services are being conducted using non-clinical personnel.
  • The organization should provide education to payers and physicians on how patient navigation is a cost effective and quality enhancing way to manage complex patients.





The development of Cancer Patient Navigators of Georgia is supported by Gasco and GCC