Glossary of Terms

Self-advocacy-is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak-up for your rights, and you are able to make choices and decisions that affect your life. The goal of self-advocacy is for YOU to decide what you want then develop and carry out a plan to help you get it. It does not mean you can’t get help if you need or want it, it just means that you are making the choices and you have to be responsible for the choices you make.

Self-efficacy- refers to an individual's belief in his or her capacity to develop behaviors necessary to achieve desired outcomes. Self-efficacy reflects confidence in the ability to exert control over one's own motivation, behavior, and social environment.

Learning Healthcare System- using technology to collect and share healthcare data from patients, clinicians, and the general population to drive better care with faster results.

Electronic Health Record (EHR)- an electronic version of a patient’s medical history, that is maintained by the provider over time, such as past medical history and medications.

Protected Health Information (PHI)- defined by the Health Insurance Portability and Accountability Act of 1996 as individually identifiable health information.

Patient Reported Outcomes (PROs)- any report about a patient that comes directly from the patient.

Institutional Review Board (IRB)- is a group that reviews and approves research on people. The purpose of the IRB is to make sure that all human research is conducted in accordance with all federal, institutional, and ethical rules.

Health Insurance Portability and Accountability Act (HIPAA)- Passed in 2003, HIPAA is a law that protects privacy and patient medical records.  HIPAA allows patients to control how their health facts are used and shared.

Informed Consent Form (ICF)- is a form that is signed before joining a research study.  The form has details about the study and its risks.

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