What Else Would Improve Research?
Talk to health researchers about the various biases found in their line of work, and they’ll want to share what can be done to improve study designs. Here are a few ideas.
Use technology
Conversations via video. Wearable technology reporting vitals. Digital surveys.
Technology makes it easier to gather data without requiring patients to visit a clinic, which can be time-consuming.
“I specifically design decentralized clinical trials in order to make trials more accessible,” said Anita Phung, MRGCP, MRCP, MBBS, a general practitioner who helps oversee clinical trials at Lindus Health, a clinical research organization. These types of trials can benefit women, who are often primary caretakers of children and older parents; people who are short on time for any nonessential activities; and people who may be balancing multiple hourly jobs to make a living, she said.
But use of technology shouldn’t take the place of conversation and connection. Spending time addressing concerns is also important, Dr. Phung said.
Collect more data
Studies are better now—although still not perfect—about collecting demographic data of participants. But Dominique Demolle, PhD, Chief Executive Officer at Cognivia, a manufacturer of analytical tools to improve clinical trials, would love to see even more information collected about patients that are not just objective measurements. Details about factors that will influence a person’s adherence to treatment and even details on their personality can be meaningful. After all, the placebo effect is powerful.
Consider this: An individual who gets medication and swallows it daily as prescribed may have a different reaction than an individual who reads every page in the packaging insert before taking their first pill, Dr. Demolle said.
Consider the patient journey
Good trial design requires empathy, Dr. Phung said, and deep consideration of the participant journey. When she examines the schedule for a trial, she tries to understand the clinical rationale and what’s being measured at every moment. And then she asks, “Are there ways that we can do this better?” Perhaps that means having someone get blood tested in their home or a local health clinic rather than traveling to the study site.
When surveys are involved, Dr. Phung tries to imagine how it feels to complete them herself, while maintaining scientific integrity. Some of the questions she asks are, “Is it too intrusive? Is it too much? What's the frequency of it?”
“Participating in a trial can be a real burden,” said Bert Hartog, PhD, founder of Hartog Digital Health Consulting. It can impose both physical and emotional imposition, he said. Decades ago, informed consent in trials used to consist of sharing the risks and benefits; now, education is woven in, with explanations of what is going to happen in the trial and why it’s important for the research.
“We want maximum engagement, really. We don't want to scare people away,” Dr. Phung said.