If you’re caring for someone you love who has a chronic disease or illness, you may want to know about new medical research studies and clinical trials of promising drugs. On one hand, medical research studies frequently provide new information for possible treatments and cures; on the other hand, it may seem impossible for a lay person to make sense of all the conflicting findings reported on TV, in the papers, or on the Internet, especially when the research is in its early stages and not ready for clinical trials of new treatments.
Here are some tips from the Family Caregiver Alliance about how to identify and evaluate useful and reliable information you may come across in the media or on the Internet, especially about medical research studies and clinical trials.
When should you further investigate a news report about medical research study findings?
According to the Family Caregiver Alliance (FCA), first, you should consider the validity of news reports that detail findings from medical research studies.
When you come across a story that talks about medical study results, ask yourself the following questions (from the Family Caregiver Alliance):
- Is the headline sensationalized or factual? A story titled “The kiwi cancer cure your doctor won’t tell you about” might not be worth investigating, but one headlined “Researchers at Stanford discover promising enzyme for Alzheimer’s treatment” may contain trustworthy information (because it mentions a reputable research institution) that may or may not be worth looking into, depending on the publisher.
- Does the story appear tied to a product or advertising for a product? Is the goal to sell you something? If so, read with caution and a healthy dose of skepticism.
- Is there balance in reporting? Does the story or article include information from more than one point of view? Getting unbiased information helps you evaluate the truthfulness of the reporting.
How can I evaluate medical research studies reported in the news?
You may decide to further investigate the medical research study mentioned in the news report. Here are some ways, according to the Family Caregiver Alliance (FCA), to evaluate medical research.
According to the FCA, your first step should be to find the original study the news report or story is based on. Sometimes these are hyperlinked in an Internet story; other times, you may need to call the news station or print publication, or go to your local library, to find the original research. Keep in mind, medical research studies contain a lot of technical words and information you may need a medical dictionary to understand.
The FCA suggests that you ask yourself these questions as you read to see if the medical research study might contain valuable information for you:
- Was the research conducted on animals or people? Foundational laboratory research done on animals can be promising, but usually is years away from being used in clinical trials that involve people. Results from a medical research study that involved people may be more meaningful to you as a caregiver.
- How many people were involved in the study? Be sure to check the number of people who participated in the study—a larger population is usually better than a smaller number of participants in a study, especially when looking at causes and treatments of chronic illnesses. Also, check how long the study went for.
- Was the study conducted by a reputable university or research institute and reported in a peer-reviewed medical journal? These usually have more credibility than information that is only published on the researcher’s website or company brochure.
- Did the people in the study have the same type of condition (at the same stage, if applicable) as you or your loved one? Medical research studies are often very narrowly tailored to a particular type of patient with a particular set of characteristics (age, health status, gender, etc.)
If the research looks promising to you after answering these questions, you may want to do more investigation on the Internet. Many websites contain valuable information, but you should watch out for less reputable sites that aren’t backed up by facts or have other interests in mind. Follow this checklist from the Family Caregiver Alliance to help you identify trustworthy sources of information on the web:
- Check the “about” section to see who runs the site and its purpose. Be wary of commercial sites selling products or services.
- Find out where the information comes from. Many medical websites include information pulled from other sources. If the information isn’t written by the organization owning the site, that should be clearly stated and linked back to the source of the information.
- Make sure the information is current. Look for the most recent clinical trials and medical research studies.
How do I know if clinical trials are appropriate for me or my loved one?
According to the Family Caregiver Alliance (FCA), a clinical trial is a research study with human volunteers. “Interventional” trials usually see whether new treatments are effective and safe, while “observational” trials look at health issues in large populations. Research institutions recruit volunteers for clinical trials in a number of ways; for example, they may advertise on the Internet, print materials, TV and radio.
The FCA advises you to consider these points first, if you find a clinical trial that seems to fit your situation and you meet the inclusion criteria:
- What are the potential risks and benefits? Are you or your loved one well enough to participate?
- Is there extensive travel or hospitalization required?
- Who pays for the travel expenses and treatment, including any side effects or complications?
- How long will the study last, including any follow-up, and how will you be informed of the results?
Above all, be sure to discuss any clinical trials with your health-care provider before you contact the study’s sponsor and apply, suggests the FCA. Prepare your questions in advance; you may want to record your doctor’s answers so you can go over any points you aren’t sure about later (be sure to get permission).
Medical research studies and clinical trials are continually making headway, so don’t give up if something you read doesn’t apply to you today. Keep reading, follow up on promising reports, and don’t lose hope. If you’d like to search for clinical trials, please see Clinicaltrials.gov, a service of the U.S. National Institutes of Health.
Medicare coverage of clinical trials
Original Medicare (Part A and B) may cover a clinical trial if it’s a qualifying study. You may have to pay 20% of the Medicare-approved amount, depending on the treatment you receive, and the Medicare Part B (medical insurance) deductible may apply.
For a covered clinical research study, Medicare pays for routine costs like:
• Room and board for a hospital stay that Medicare would have paid for anyway, regardless if you were in a covered medical research study
• Operations to implant something that’s being tested
• Treatment for side effects and complications that may result
However, Medicare will not pay for things like the new item or service the trial is testing (unless Medicare would have paid for it anyway), free items or services, or items/services not used directly in your health care. You still need to pay any required Medicare Part A and Part B costs such as deductibles and coinsurance.
Do you have questions about enrolling in Medicare plan options? I can tell you about the various choices you might have for Medicare coverage in your area. To get started, simply click the Get Quotes button to schedule a phone call or to request a personalized email.
For more information about clinical trials, please see:
“Should you join a clinical research study?” Medicare.gov, last accessed August 18, 2016,