Hello there bloggies! Welcome to this delayed edition of Science Sunday! I have felt just awful the last couple of days and tried to conserve my energy. Hopefully, this illness is on its last legs!
Anyway, back to the science!

Many scientists rely on people volunteering their time, effort, samples, and data in order to perform their research and move science forward. Without these study participants, scientific progress (particularly in biology and medicine!) would be next to impossible.

As you all may remember, I recently attended the American Society of Human Genetics annual meeting. During one of the plenary sessions, the organizers had a panel in science communication completely comprised of non-researchers. I had never been to a conference where they gave the microphone to people whose primary job was not working in the lab. Here’s a link to the session description and a youtube video summary. I believe the full session will be available online. I will keep you posted!

In addition to two science writers and communicators (Ed Yong and Liz Neeley), the panel also had a patient advocate named Andrea Downing who has participated in numerous research studies, as she is a BRCA1 breast cancer mutation carrier. Here’s a link to her site Brave Bosom and her twitter @BraveBosom. Hearing what she as a patient and study participant had to say was thoroughly enlightening, interesting, and honestly a viewpoint I as a researcher don’t always take into consideration (but I should and hope to work on!!).

There was so much to take from her perspective, but the main message I took away was the need to appreciate study participants and constantly communicate with them. Research teams constantly fret about subject recruitment and getting them into the lab for data collection. Communication with participants before, during, and after study protocols frequently is lacking.

Before starting, discuss new studies with patient populations or even the geographic population you are studying. What questions are you looking to ask? What do you hope to learn from this work? What investment are you looking from the community? Often, your future participants will have insight (that you would never have yourself as a researcher) that will better measure the data you are looking for or will increase participation. Patient communities can also have insights that lead to new areas of study. They do have first-hand experience living with or living with people affected these conditions. That first-hand knowledge can reveal things decades of research never could.

During the study, clearly and simply explain protocols and why you are doing them. Make sure to include any possible hazards and be sensitive to any anxieties. Keep your ears open! Participants can often point out common sense issues with your study protocols.

After the study, don’t simply lose your participants email addresses or phone numbers. They have made a huge personal investment into your work. They deserve to be kept up to date on the findings and their possible implications, particularly if they could influence disease treatment.

Remember that without study participants, research is really really hard! Appreciate the time and effort they have invested. Treat them with respect and honor their time and participation!

Thank you for stopping by this belated Science Sunday! How do you keep the lines of communication open with your study participants? Or how could you do better? Let me know in the comments below or on twitter @DrFsThoughts.

See you all later!!

-Dr. F

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