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THE POWER OF THE MIND. Cancer patients in Dr. Shelley Johns' study reported that practices like mindfulness meditation had life-changing effects.

REDCap proves vital to research on behavioral interventions for cancer patients

IU’s web app for online surveys and databases allows scientist to study effectiveness of mindfulness on symptoms like fatigue, pain, anxiety

As a clinician-scientist working in the palliative care program at Eskenazi Health in Indianapolis, Dr. Shelley Johns has become deeply aware of the needs of adults with cancer and their family caregivers.

After 20 years in supportive cancer care, she found that, though pharmacological treatments are indispensable, they aren’t always available or adequate for common symptoms like fatigue or fear of recurrence.

Johns’ research investigates the efficacy of non-pharmacological behavioral interventions such as Mindfulness-Based Stress Reduction (MBSR) and Acceptance and Commitment Therapy (ACT) in adults with cancer. These kinds of behavioral interventions have proved useful in addressing a variety of common symptoms, like fatigue, pain, depressive symptoms, anxiety, sleep disturbance, and cancer-related cognitive impairment

Dr. Shelley Johns
Dr. Shelley Johns

Though the studies Johns’ team undertakes do not involve administering drugs, they go through a similar research process that includes rigorous randomized controlled trials. The group conducts empirically sound research involving the collection of quantitative and qualitative data, and follows its patients for several months.

During this process, the team strives to make the clinical trial experience as convenient as possible for participants. IU’s tool for creating secure, web-based data-entry systems, known as Research Electronic Data Capture, or REDCap, makes this easy. It allows participants to complete study assessments online, and by providing the research team with a wealth of tools, including the ability to schedule automated email survey invitations and reminders with just a few clicks.

 

As a relatively new investigator on a tight budget, I find that utilizing REDCap helps save precious research dollars by promoting efficiency among my research team. It helps us to work smarter, not harder.

Dr. Shelley Johns, Eskenazi Health

REDCap allows for instant access to data so that Johns and her team can check progress on trials anytime and anywhere. Researchers can also duplicate an entire survey or battery in REDCap to use as a blank slate for a new project.

“As a relatively new investigator on a tight budget, I find that utilizing REDCap helps save precious research dollars by promoting efficiency among my research team. It helps us to work smarter, not harder,” Johns said.

Also, because they work with a distressed population, Johns and her group always administer a brief measure of depressive symptoms (PHQ-8) in their surveys. REDCap can be programmed to alert the team in real time if a participant reports a clinically significant score, allowing for timely referrals to local mental healthcare professionals. In this way, and many others, REDCap helps the team serve its participants.

“I have found that committing to practices like mindfulness meditation—paying attention to the present moment without labelling experiences as good or bad—can really help people increase their quality of life, even given the presence of unwanted thoughts, feelings, bodily sensations, and other realities,” Johns said.

Many participants in her studies have gone so far as to describe these practices as life-changing. Johns is currently seeking federal funding to test these interventions on a large scale, and to promote uptake of these interventions in cancer centers and clinics across the country and beyond.