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

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

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)

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 . 2016;315:2063-2064 Makoul, G.,Clayman, M. Pat Ed and Counseling 2006;60:301-312)

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

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;60 301-312

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

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

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

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