The pandemic accelerated the rate of change for many industries and research is no different. Researchers had to move to a remote-first approach whether they liked it or not. Study participants are now expected to provide information via computer or phone.
But with these changes have come some new challenges that play out differently in a remote-first world. For example, many participants are now accustomed to participating in research from the convenience of their home and don’t want to travel into a facility unless necessary.
This creates challenges in retention and participant satisfaction as we can’t sit with them at home and insist that they complete their questionnaire (an issue we didn’t have if someone came into a location).
How can we improve retention and participant satisfaction in clinical research?
At QuesGen, our company does the screening and tracking software for research participants so we see this firsthand -- all day, everyday. Because of this, we’re always looking to enroll in studies to see how well studies are being conducted.
Some are good, but many have deficiencies that could be easily fixed with a simple in mindset and language.
Here are a few ideas:
First of all, we need to stop dumbing it down.
There is a constant effort to write the consent documents and everything that describes the study at a 6th-grade reading level. That’s fine if that means clear, well-crafted sentences.
However, if you are writing to a 6th-grade comprehension level, you run the risk of insulting participants who understand what is going on. While warnings and disclosures are required, make sure to share some of the science and the study objective to the extent possible.
People are interested in the science – which is what brings us to the next point . . .
People are interested in contributing to the research, not the $10 Starbucks card.
There are several reasons that people participate in research. For people who are ill, they’re often hoping to receive some sort of cutting-edge treatment that may help them address their illness.
For healthy people, the most common reason is likely altruism, unless there is a substantial payment for participation.
We were involved in a dietary study where the researchers provided food, and since it was a specialized diet, they received significant compensation. They found that people in it for the money would take the food and the money and then eat whatever they wanted.
It is reasonable to acknowledge participation with a token payment (like an Amazon card or Starbucks card) but make sure that the people engage with the research, not just the prize. This is especially true if the monetary amount is somehow seen as a “value” of their time.
A $10 gift card for an hour is less than minimum wage, so focusing on the compensation could be downright offensive. People care about advancing medicine – focus on that.
Share the study idea and let them know what you learn and the progress that you are making.
Share what you learn, especially about the participants – even if it requires some additional effort.
To illustrate this, we were involved in a study looking at a novel way to assess kidney health. The result was a numeric score, but the test required some interpretation from a physician.
As a result, the IRB told the research team that they couldn’t share any results with the participants. On the one hand, the logic is that if you can’t give them complete information (which was beyond the scope of the study), then don’t give them anything at all.
On the other hand, it would have been beneficial to know at least where they are in the range, suggesting that they consult their physician if the kidney function looked compromised.
While it might have been a little more work for the research team, to tell the people they were in the:
- healthy range,
- mild concern or
- recommend that they see a physician
It would also provide participants more value and would be very reasonable to accommodate.
Frankly, it is a bit insulting as a participant to feel that I am giving you a sample from my body to test your scoring mechanism about my health, but you won’t even give me the result. Even if the assessment is yet to be validated entirely, it would still help people know what is going on.
We live in a world where we know a lot of information in advance, from weather to traffic conditions, and we can google an answer to nearly everything. To not know what’s going on isn’t a feeling we’re familiar with and it creates breaks in trust, which doesn’t bode well for future study recruitment.
Share the personality of your team and let them connect with you.
People like to work with people, not processes. Much of the work we have done recently is to improve the automation for collecting data. It is much more efficient for the research team, but it isolates them from the participants.
Are there ways to create a more personal experience while still retaining efficiency? Absolutely.
Rather than simply relying on a text-heavy sheet of instructions, consider putting together an explainer video done by a member of your team– or maybe do both for people with different learning styles. We even saw this to be the case with many of the COVID-19 testing kits that emerged from the pandemic, including an app and video instructions to get the test done right.
In any case, put your team's faces and backgrounds into the process, and the participants will be much more connected and more likely to complete.
Consider asking participants what they thought of being in the study.
As consumers, we are constantly asked our opinion or feedback about an experience. If you order trash bags online, you will probably get a follow-up email asking how they worked and was the delivery process acceptable. You can’t go through a fast-food drive through without being prompted to take a survey.
However, it isn’t typical for the research teams to get participant feedback. Reach out and ask about their experience. What could you have communicated better? What was the most rewarding part?
These insights will help you shape how you recruit participants and run studies going forward – plus it gives the participant a chance to feel that they offered value beyond the study.
When your process is complete, have someone you know go through it and see it through their eyes.
When you are putting together your documentation, building the systems, doing the IRB paperwork, it often is a frantic process with a push to get everything complete.
When you are ready to launch, spend an extra few hours and have someone go through the documents as a new participant. Make sure that the message is clear, thoughtful, kind and engaging. You might make several small changes that could end up having a significant impact on your recruiting and retention.
As researchers and scientists, we’re often too close to the discipline to truly see the opportunities. Participants and outside “eyes” can help us improve the process, language, and more, and all it takes is a step back.
