Online Studies Offer New Ways to Take Part in Research

The vast majority of Americans recognize the value of medical research and the importance of human subjects participating in studies. But when it comes to volunteering for research, there’s a lot of hesitation.

Less than 10 percent of Americans have participated in a medical research study of any type, according to a May 2008 survey of more than 2,000 U.S. adults by the Society for Women’s Health Research.

Why they would be hesitant to participate? Many say they don’t have the time. That’s not surprising when you consider that Americans increasingly say the length and quality of their leisure time is on the decline.

Participating in research involves personal sacrifice, including time – time spent traveling to and from a research facility or doctor’s office and time spent participating in the study.

Thanks to the Internet, there are now opportunities to participate in research online. Some studies that focus on patient reported behavior or experiences take place entirely online. That’s good news for patients who want to volunteer for research, but feel they can’t because of work, family and other time consuming commitments.

For example, patients are now being recruited for an online study that is measuring cognitive limitations of women breast cancer survivors who return to work. The study is being led by Lt. Lisseth Calvio, M.S., of the U.S. Navy, who is a doctoral student in clinical psychology at the Uniformed Services University of the Health Sciences in Bethesda, Md.

The study is looking for female breast cancer survivors, one to 10 years after primary treatment, such as surgery, radiation or chemotherapy, and women who have never had cancer. The women should be working full time and be between the ages of 18 and 65.

“The study is trying to verify the best way to measure cognitive limitations,” Calvio said. “A lot of breast cancer patients are expressing changes in their cognitive function. First, how do we measure that? Once that is determined, we can develop strategies to treat or help cancer survivors.”

Over 80 percent of breast cancer patients return to the workforce within a year of their primary treatment. There is growing evidence that some breast cancer survivors show impaired cognitive performance after treatment, which could impact their ability to resume a normal and full functioning life, including work.

Participants in the study will take a short online questionnaire and a test of memory, attention and organization that takes 60 to 75 minutes to complete. The study can be taken by anyone with a computer and an Internet connection greater than dial-up.

There are advantages of an online study for both the researchers and participants.

“It allows us to cast a wider net and obtain a larger sample size” Calvio said. “Online studies can attract more diverse populations. People of different backgrounds are going online more and more.”

That’s an important point, considering that residents in rural areas or cities without major medical facilities are less likely to participate in research because of the distance they must travel.

A study published in the July 10 issue of the Journal of Clinical Oncology examines research participation in Maryland and finds the state’s rural and minority residents are underrepresented in federally funded cancer treatment clinical trials.

“Without adequate diversity, it may be difficult to generalize about trial results because you don’t know whether new treatments or preventive strategies have comparable effects” for different groups of patients, according to Claudia R. Baquet, M.D., lead author of the study and director of the University of Maryland’s Center for Health Disparities Research and Outreach.

As research techniques evolve and computer access grows, the Internet may play an increasing role in closing those gaps.

To find out about other research participation opportunities, including online opportunities, visit ClinicalTrials.gov, a Web site from the National Institutes of Health. Information tailored for women about the process of participating in research is available from the Society for Women’s Health Research at WomanCanDo.org.

Source: Society for Women’s Health Research (SWHR)

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