As a project manager at Group Health Research Institute for almost 20 years, I’ve worked on many studies — some that involve lots of contact with individual participants, and others not so much. But I’ve always been intensely aware that without our research volunteers, we couldn’t do the important work we all believe in: science that helps real people live healthier lives.
Take, for instance, one of my current projects — a small pilot led by Andrea Hartzler, PhD. We’re testing how a new phone app can help people with chronic conditions develop better exercise habits. Study participants are asked to record their activities on paper for two weeks, wear a Fitbit to track their activities and use the app for six weeks. They also have to come to our research clinic in downtown Seattle three times for interviews and assessment. Most live fairly close, but one participant drives nearly two hours from Aberdeen, Wash. to take part! I find that kind of commitment humbling.
What inspires people to take part? I’m sure the answer depends in part on the study topic. Our studies on cancer screening, prevention, and treatment, for example, can inspire participation for survivors and their family members who want to fight life-threatening diseases. Our back pain studies draw people looking for better ways address a nagging problem. And for studies like Dr. Hartzler’s phone-app project, volunteering may simply be a fun way to learn about new health-related technologies.
But whatever the motivation, there is always an element of selflessness. And it’s important for us to say thanks. That’s why I borrowed one of my colleague’s ideas (thanks, Rene Hawkes!) of writing thank-you cards. I asked my team to present the cards to each participant after their first clinic visit.
And here’s the surprising and touching thing that happened: One participant was so pleased to receive the card that she gave me a gift in return! At her second visit, she brought me a copy of Emily Post’s Book of Etiquette that once belonged to her mother. She tied it with ribbon and a beautiful fall leaf. Unfortunately, I wasn’t there to receive it in person, but she told my co-worker Catherine Lim that her mom often referred to the book when she wanted to teach her kids the meaning of kindness. She said she couldn’t remember the last time she had received a hand-written thank-you note. So she wanted me to have the book in appreciation. It chokes me up a little just to think of it.
We as researchers should always be thoughtful about the requests we make of our study participants.
Now I’ve got the book sitting at my desk to remind me: We as researchers should always be thoughtful about the requests we make of our study participants. We should make their participation as meaningful and as easy as possible. And we should never take their effort for granted. Our expression of thanks might mean more to them than we can imagine.
— Kelly Ehrlich