1. Sylvia Lempit, MSN , APRN Yale New Haven Transplantation Center
Patient Advocacy, How to Find a Doctor, and Navigate the Healthcare System
Sylvia Lempit, MSN , APRN
Yale New Haven Transplantation Center
PSC Partners 2016 Conference
June 24, 2016

2. Patient Advocacy Patient Centered Care
Respect for patient’s values , preferences and expressed needs
Communication between patient and providers that provides
timely, accurate and comprehensive education about the impact of disease and illness
Address physical and emotional concerns
Involve patient’s support network (family/friends)
Provide transitions and continuity of care
Delbanco, T., Gerteis, M. Up to Date. 2015; 1

3. Patient Advocacy Informed Consent
The Process by which a patient learns about and understands the purpose , benefits , and potential risks of a medical or surgical intervention, including clinical trials, and then agrees to receive the treatment of participate in the trial. ‘
Informed consent usually will require the patient to sign a statement that they understand the risks and benefits of the procedure or treatment. (MedicineNet.com 2015 , accessed June 23, 2016)
Informed Consent requires the patient to be competent, and is a voluntary act
(MedicineNet.com; 2015, 1.accessed 6/23/2016)

4. Shared Decision Making
Patient Advocacy
Shared Decision Making
Collaborative exchange of information between the provider and patient
-Identification of problem – presentation of medical /surgical options
Understanding of the risks and benefits
Patient participates in decision making process
Patient communicates values/preferences
Spatz, E., Krumholtz, H.,Moulton,B. JAMA ;315:
Makoul, G.,Clayman, M. Pat Ed and Counseling 2006;60: )

5. Collaborative Partnerships
Physicians/Care Providers
Patient Advocacy Groups
Patient “Champions”
Support Groups
Patient Self Care

6. Patient Advocacy Patient to identify goals of care, outcome
Short and Long Term
Consideration of impact of medical decision making on the following domains:
Physical
Emotional
Financial
Spiritual
This is a evolving and dynamic process and may change over time
Makoul, G. Clayman, M.Pat Ed and Counseling.2006;

7. Patient Advocacy Identify your goals of care
Identify your expectations
Ask questions
Consider Risk vs Benefits
Be flexible and understand that treatment options may change

8. Navigation of the Healthcare System
Complex and fragmented
Coordination of care often difficult
Identify physicians, specialists for medical issue
Medications and Therapies
Clinical Trials
Insurance Resources

9. Navigation of the Healthcare System
Data management and how to keep track of information , treatments medications and procedures.
Individual Health Care Records “paper “
EMR’s that provide computer access “My Chart”
Spreadsheets
Journals/Notebooks/Files

10. How to Find a Doctor Patient Advocacy Groups - PSC Partners
- American Liver Foundation
-AASLD ( American Assoc. Study of Liver Diseases)
Other Patients
Physicians : Traditional referral
Insurance Company : “ Preferred Providers”, “Centers of Excellence”
Medical Centers/Hospitals with area of expertise/specialty
Conferences