1. Developing a Health Passport: A Guide for Navigating Health Care
Stephanie Mulkey Educational Seminar 
Pat Corley RN
September 8, 2016

2. Goal:
Empower people living with Sickle Cell Disease by promoting independence and self sufficiency through education.

3. Stigmatize Label as socially undesirable or unacceptable.
“ A lot of nurses and health care professionals in general have preconceived, erroneous ideas that sickle cell disease patients are just drug seekers.” In reality, these patients are hurting, and it’s often up to nurses to make sure they receive the pain control and disease management care they urgently need.”
Bonnye Johnson MSN University of Illinois

4. 3 C’s directed at managing Health Care
Communicating
-Learn how to talk with Health Care Providers
- making a formal complaint in writing
Familiarize yourself with your Health Care Facility and chain of command.
- Learn to file a formal complaint

5. Comprehending/Understanding your condition and the health care system - Education is the key to managing your sickle cell condition! understanding your disease and available Familiarize yourself with your condition treatments/resources. Knowledge

6. Controlling your life and care study and know your body and as it relates to your medical condition.

7. Always request that your PMD be involved with and informed about care proposed and rendered to you.
- Identify the Hospital where you will receive your care.
Try to avoid using multiple hospitals and Doctors.
Attitude is important

8. Health Passport Information (1)
Identifying demographics
Medical diagnosis and history inclusive of complications
your normal lab values and Blood transfusion Record
Insurance information
Health Directives Medical Record Number
Advocates information (Name, phone number , address of person to be contacted)

9. Health Passport Information (2)
Current medications and important medications your are no taking
Allergies or side effects to medications
Names of prescribed medications (Prescriptions bottles or list of medications) including amounts/dosage frequency and mode .
PMD’s treatment plan for managing your painful episodes both outpatient and inpatient .

10. Health Passport Information (3)
Your Pain Diary or Journal
Pain Contract
Usual Pattern of Pain
Notebook with Health Information including prior discharge papers

11. Pain Considerations
Assessment of your pain experience past and present
Knowledge of Pain Descriptors Report your pain accurately using descriptors which paint a vivid and colorful picture
Understand your treatment Options
- Difference between opiod use versus misuse
- addiction versus dependence
-Role of non-o piod and adjuvant like local anesthetics
complementary and alternative therapies
Non-pharmacological treatments

12. Pain Considerations
Limitations of pharmacological and non- pharmacological pain management modalities
Equianalgesia doses
Familiarize yourself with the Patient’s Pain Bill of Rig Importance of matching drug use to pain intensity
Side effects vs allergic and tolerance
Use of pca as an inpatient
Overall safety

13. Conclusion: Use your passport for a better healthcare encounter