Where Medical Research May Fit Into Advance Planning

Medical research helps professionals understand and improve disease treatment, diagnosis, and prevention. According to the U.S. National Library of Medicine, there are more than 139,000 registered clinical studies in the United States as of 2023.

Thinking about taking part in medical research in the years to come may strike you as a rather unexpected part of long-term health care planning, yet it can be essential.

Research participation can have benefits and drawbacks. The decision of whether to join an experimental trial or decline is often nuanced.

As you prepare for the future, it is important to learn more about medical research and consider how you feel about its potential risks. Discuss your wishes with your loved ones, including your agent under a health care power of attorney.

Understanding Medical Research

There are different categories of medical research. The type of research may or may not directly impact your health.

Typically, medical research can be observational or experimental. Both types of studies generally aim to benefit future patients. In experimental studies, also known as clinical trials or interventional studies, researchers introduce an intervention of some kind that may potentially have an impact on your condition.

• In observational studies, the researchers do not put in place changes or interventions. They observe and record data without control over the study environment. For example, in an observational study, a researcher might ask people with a certain condition to record what they eat to see if an association exists between diet and health outcomes.
  
  Although observational studies can help people learn about diseases and develop new treatment strategies, being part of one is unlikely to benefit your health directly.
• Experimental trials involve changing an aspect of care. Researchers treat participants with a specific intervention, such as a device, medicine, surgery, or behavioral change, to see whether it affects their condition. Patients in an experimental trial may be able to try a new drug that is not available to the general public. For instance, an individual diagnosed with a progressive disease such as Alzheimer’s or amyotrophic lateral sclerosis may be open to taking part in a clinical trial now or in the future.
  
  While an intervention could improve your symptoms, it could also have no effect or lead to a worse outcome.

Benefits of Joining a Research Study

There are several potential advantages to participating in medical research.

• You could be assisting scientists in understanding your condition, helping future patients by contributing to advancements in medical science.
• Depending on the study, you may be able to access an advanced medical care option. This could include an experimental drug, surgery, or medical device. If the intervention is successful, it could improve your quality of life.
• Studies typically provide financial compensation. The amount of compensation depends on the study, with more invasive and time-consuming research generally paying more.
• You could also learn more about your health through the study.

Drawbacks of Engaging in Medical Research

Study participation also may come with potential drawbacks.

Considerable risks can accompany medical interventions that are not available to the public. Researchers might hope that a particular intervention will be effective, but they have yet to determine whether it works. Always review the risks before participating in a study.

• The intervention could harm your health. Even when effective, it could also have unforeseen side effects.
• Some experimental research involves the use of placebos. These are designed to look like real interventions but have no medical effect. Studies often include placebo groups to compare the group that received the treatment to another that did not.
  
  Ethical rules require researchers to let you know whether the study uses placebos. However, you might not know whether you are receiving a placebo or the intervention.
• Earning money from the research could affect your eligibility for government benefits, as payments could be considered income. According to the National Institutes of Health, $600 or more in compensation is taxable.
• Undergoing medical research often entails sharing personal information, including personally identifiable data and details about your health. Even when researchers promise to keep your information confidential, data breaches could occur.

Each study has unique considerations. Before agreeing to participate in a study, you or your health care proxy should learn more about the research and assess the advantages and risks.

Preparing for the Future With a Health Care Proxy

Considering your views on medical research participation is an important part of planning for the future.

Should you become incapacitated, a health care proxy will need to step in and make decisions about your medical care. This could potentially include participation in medical research. You should speak to your intended proxy, as well as other family members, about your views.

When you create a medical power of attorney, you can appoint someone you trust to make decisions for you. This can give your agent information to support a decision consistent with your wishes.

In addition to talking with your loved ones about your views on taking part in medical research, you can state your preferences in an advance directive, which can guide your health care proxy.

Consult with an attorney for assistance in developing a plan for your future care.