Participating in Research

Research Participation

What is scientific research and why is it important?

  Scientific research, in the context of medicine, acts as the foundation for many therapies, techniques, and policies that exist today.  At its core, each research study aims to answer a question. This main question is also known as the hypothesis of the research study.  Scientists collect data, or pieces of information, to support the validity of their results.  After a study is completed, the data is analyzed and submitted to a journal for review by other scientists before being published and shared with the world. Research plays different roles in different domains.  New molecular discoveries on a cellular level in a university research lab can help scientists understand how a disease develops, or support the development of a new treatment or cure for a disease [1]. With results from multiple studies, doctors are able to improve the quality of their care, a practice now called evidence-based medicine [2].  Research can also help public officials make policy decisions in order to promote public health and protect the safety of citizens from things like infectious diseases or provide social assistance programs [3]. While most research takes years to make an impact, a special form of research, called translational or applied research, is set up to rapidly take research discoveries from the laboratory bench to a patient’s bedside [4,5].

Who pays for research? How do we make sure research is ethical?

  Research in the United States is mainly funded through grants distributed by government entities like the National Institutes of Health (NIH), Centers for Disease Control (CDC), and Department of Defense (DoD).  Funding can also be secured through private collaborations with corporations or through non-profit organizations.  A properly planned and funded research project is important because it ensures that the right team is put together, the plan is executed properly, and the results are disseminated to the public.  Such plans are outlined in the researcher’s submission to their Institutional Review Board (IRB) [6], a committee designed to protect patient safety and privacy and uphold the highest standards for scientific research.  Each IRB is typically composed of scientists, administrators, advisors, and normal citizens to ensure that all voices are represented.

What does it mean when a patient opts in or out of future research participation?

  Research participation is completely voluntary, meaning if you do not wish to participate, you do not have to.  As a participant, each research study typically has different requirements to take part in the study.  Information collected can include (but is not limited to):
  • biological samples (blood, saliva, urine, etc.)
  • questionnaires (“How are you feeling on a scale of 1-10?”, “Do you use tobacco products?”, etc.)
  • diagnostic tests (MRI, endoscopy, ultrasound, etc.)
  • demographic information (age, sex, weight, height, etc.)
If you have questions about participating in a particular study, the researchers will be able to provide you with the information you need to make an informed decision to participate or not participate. The description of the goals of a research study, requirements for you as a participant, and potential risks or benefits is a process known as providing “informed consent” [7]. Sometimes, researchers may want to keep in contact for future research studies, particularly in cases where a patient has a rare disease, condition, or genetic variant that is uncommon in the general population.  There are typically two options provided: an “opt-in” clause, in which you must actively choose to participate in the research, and an “opt-out” clause, in which you must actively refuse to participate in the research.  Sometimes a third option is provided to consent to be contacted at a future date if you are not sure which option to choose at the current time, however, this varies from study to study.  Each strategy has its advantages and disadvantages. An “opt-in” clause supports patients’ autonomy in decision making by requiring them to explicitly choose they would like to participate in the research.  An “opt-out” clause can increase research participation by means of a phenomenon known as the default effect [8].  You may have seen a similar setup before with your paycheck; many employers set up an “opt-out” retirement savings option where a portion of your pay is automatically tucked away into a retirement savings account.  Regardless of whether a study is “opt-in” or “opt-out” by design, the goal is to balance patient privacy and control over their information with the broader goals of the research.  By participating in research, you may have the opportunity to help scientists and researchers discover new information to help treat or cure a condition in the future.