Patient advocacy involves preparing for appointments by requesting medical records, engaging your support system, and taking care of yourself physically and emotionally. Align expectations by asking questions of your care team, and facilitate timely access to quality care by overcoming barriers such as a lack of information or support.

1. “How To Be Your Own Best Advocate”
For Your First Appointment
Colleen Sullivan-Moore, RN, CN-BN, MS
The 9th Annual
Living With and Beyond
Cancer Conference
Saturday, June 27, 2020

2. INTRODUCTION
• Patient Navigators, “The Ultimate Patient Advocate”
• First Step – Breathe, Just Breathe
• Engage Your Support System
• Prepare by requesting your cancer-specific information
• Ask questions to align expectations
• Self-Care

3. What do patients and patient navigators have in common?
Common Goals to Overcome Barriers:
• To facilitate timely access for all to quality standard care in a culturally sensitive
manner.
• This was derived primarily from the original patient navigation concept and model,
which was pioneered by Harold P. Freeman in Harlem, New York*.
*https://cebp.aacrjournals.org/content/21/10/1614

4. THE FIRST NAVIGATORS
The nation’s first patient navigation program was conceived and initiated
in 1990 in Harlem, New York, by Dr. Harold Freeman. This original program
focused on the critical window of opportunity to save lives from cancer by
eliminating barriers to timely care between the point of a suspicious
finding and the resolution of the finding by further diagnosis and
treatment.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4557777/

5. COMMONLY EXPERIENCED BARRIERS TO
TIMELY CARE
• Financial and access barriers, such as no health insurance
• Communication and information barriers
• Medical system barriers
• Fear, distrust, and emotional barriers
http://ww.ncbi.nim.nih.gov/pmc/articles/PMC4557777/

6. FIRST, “TAKE A BREATH”
• While sitting or standing upright, inhale through your nose and try to
fill your lungs with as much air as you can.
• Hold your breath for about 2 seconds.
• While gently pressing in your navel with your hand, slowly release the
air through your mouth for about 5 seconds.
• Try to imagine the tension leaving your body.
https://www.webmd.com/lung-cancer/nsclc-breathing-exercises

7. ENGAGE YOUR SUPPORT SYSTEM
(Friends and Family to Assist You)
• Accompany you to your medical appointments.
• Review questions in preparation for your appointments.
• Act as a scribe and be that second set of “ears” for appointments.
• Be available to “be a good listener.”
• Help you prioritize your needs while engaging in treatment.
• Act as a the point person for extended family.

8. PREPARE YOURSELF
Request Cancer Specific Information:
• Copies: pathology, lab and x-ray reports (related to diagnosis).
• Name of facility’s professional advocate: navigator, educator and/or
specialist assigned to provide services.
• Treatment Team Contacts (names, specialties, and phone numbers).
• Supportive Care Team Members: Counselor, dietician, genetic
counselor, financial advocate (names, specialties, and phone
numbers).

9. QUESTIONS TO ALIGN EXPECTATIONS
• Appointments, first and future - when?
• Education related to my new diagnosis - when?
• Name and number of my physician specialist team?
• Date, time, location, and duration of medical appointments?
• Required additional diagnostic tests?
• Resources: “What do I do with unanswered questions?”

10. • Identify dedicated support network
• Counselors and Support Services
• Financial Advocates
• Sources for Education Material
• Free Support Groups
• Free Helpline – Open 7 Days a Week
https://www.cancersupportcommunity.org/resources

11. SELF-CARE
• Take a break when you need it, slow down, and find some quiet time.
Go to a movie.
• Journal. Perfect outlet for processing emotions.
• Ask for help and accept help when it is offered.
• Get more sleep and rest.
• Listen to music that you love.
www.lls.org/article/self-care-with-a-cancer-diagnosis

12. NONBIASED
Nonbiased, trustworthy sources when you do your research. Begin with the
websites for the American Cancer Society and the National Cancer Institute.
https://www.webmd.com/cancer/features/cancer-diagnosis-what-to-do-next

13. SUMMARY
• Patient “Self-Advocacy.”
• Breathe and focus on being present.
• Support system strength.
• Obtain your cancer-specific information.
• Get questions answered.
• Care for yourself!
• Thank you!