Clinical Research Is Not For Guinea Pigs
Why Should I Volunteer to Participate in a Research Study?
Every day in our busy lives, we are asked to give something for the benefit of mankind. We may be asked for financial donations to support the local high schools or community teams. We may be asked to reach into our pockets to give freely at churches and synagogues, bake sales, car washes, or fund raisers. We are frequently being asked for donations to eradicate cancer, multiple sclerosis, muscular dystrophy and other devastating diseases. We’re asked for food donations, old cars, used cell phones, etc. We are often encouraged to help out for specific situations such as donating blood, giving clothing to a family who lost their home in a fire, or provide shelter for those in need. On a larger scale, our help may be needed in rescue attempts or clean-up from natural disasters or rebuilding to put lives back in order. Be it material, money, time or energy, giving is volunteering and volunteering is the ultimate gift each one of us can provide!
Clinical research is another way to volunteer your time and services to advance the knowledge of a specific medical question. Clinical research is building blocks; collecting similar information one patient at a time to clearly understand an issue. The answers provide us with better treatments, choices and outcomes for all patients. Whether it’s knowing how many people are suffering from one particular disease or how best to treat an ailment, or to what extent an individual would be affected by a certain symptom in the general population, clinical research is the foundation of collecting and understanding medical information and making it available for the entire world to use. Society benefits from each and every participant in one way or another.
There are many different reasons to begin a study. First you need to identify the question. Second, you need to design a protocol or a set of guidelines to help answer that question. Third, you need to collect, organize and analyze your data. And fourth, you must report your findings. Careful thought goes into the design of each study. A search is performed to determine whether similar work has already been done. This helps to improve the study design by eliminating flaws from trials previously reported. There are many more aspects involved in conducting a study, such as paying for the project, finding study participants and ensuring all the rules are followed appropriately. In the end, though, knowledge and education is the goal to benefit mankind.
You may be asked to participate in a Clinical Research Study one day. The important factors for you to consider are:
- Do I understand everything I need to know?
- What are my risks?
- What are my benefits?
- What are my options?
All of these questions should be clearly understood before you agree to volunteer. As a study participant, you may not gain obvious benefit from your participation. However, you will most certainly obtain a significant amount of education while spending time with study personnel whose job it is to work with the patient, the doctor and the study sponsor. You may receive medication or treatment, you may only be asked to respond to specific questions. You may need to stay involved for one year, maybe longer or your participation may last only one day. Some participants try out new testing equipment, some try new medications or new surgery techniques. At times we may be comparing treatments or medications to see if one is superior over the other. Some studies are designed to measure how well patients are progressing, other studies are designed to test how well each doctor performs certain tasks compared to their peers.
Long ago a young teacher set out to help a child desperately in need. Anne Sullivan didn’t realize at the time how influential her experiences with Helen Keller would be for future generations. In the same way, your experiences as a patient and a study subject may help many others.
Research is the collection of information, used to build the foundation for learning. It provides the tools for knowing what works and what doesn’t work. Remember, clinical research is not for guinea pigs. Those hairy little creatures just don’t have what it takes to be a volunteer.