What kind of research do PARTNERS do?

Lupus Foundation of America

Resource Content

Comparative effectiveness research or CER is research that compares treatment choices. Which medication will work better for my disease, drug X or drug Y? What are the side effects? Patients often times have very little evidence-based information when faced with a choice between different treatments for their condition. As a result patients are forced to rely on their physician’s opinion and experience using a particular medication.

Why is Comparative Effectiveness Research (CER) Important to Patients?

Suppose your coffee pot broke and you need to replace it. You can fill libraries with easy to find and easy to understand information comparing different models of coffee pots. What are your needs (desired outcomes) in a coffee pot? Do you want something that keeps coffee piping hot? Do you need to brew many cups at a time or single-serve? How quickly do you want the coffee to brew? Are you a connoisseur and want highest quality no matter how long it takes? The consumer has access to a wealth of information needed to select their choice. In the health care world of selecting a coffee pot, the patient would only be able to ask their doctor for advice on which coffee pot to select. What if what’s important to your doctor in a coffee pot is not important to you? Why is there so much information available in selecting something as trivial as a coffee pot and nothing available when making the choice on which medication to use?

How do we find the best care for kids with lupus? Learn more.

Glossary of Research Terms

  • 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.
  • 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.
  • 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.
  • 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.
  • Patient Reported Outcomes (PROs) - any report about a patient that comes directly from the patient.
  • Protected Health Information (PHI) - defined by the Health Insurance Portability and Accountability Act of 1996 as individually identifiable health information.
  • 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.