Patient involvement shouldn’t end when a trial closes. If you really want subjects to feel they are part of the team, you need to share the results with them, says one cancer survivor turned trial advocate.
Mary Elizabeth Williams, who wrote about her clinical trial experience in her book A Series of Catastrophes and Miracles: A True Story of Love, Science and Cancer, says sharing trial results with participants builds a sense of pride and accomplishment that can translate into a more positive public view of clinical trials.
Unfortunately, that doesn’t typically happen, Williams said.
“Everything I know about my clinical trial comes from basically my own initiative and from my work as a journalist, and from my research,” Williams told WCG Clinical Chief Medical Officer Lindsay McNair in a recent interview. And what information she did receive was hard to understand.
“I had to have people explain to me what endpoints are and what ... the charts were and the data was. I wouldn’t have understood it myself, and I don’t think any layman would.”
A summary of the trial written for the layman would be “amazing,” she said. “To have your hospital or your facility communicate with you, and say, ‘If you would like to read some of the study results, here is where it was published [and] here’s what that means,’ how fantastic would that be?”
“We live in a culture where all we want to do is know about ourselves.”
Understanding the implications of your trial participation gives you a sense of pride in being part of medical advancements, Williams stressed. “I know how proud I feel of the little teeny, tiny part I played in medical science. I am really proud of that. I am really excited about that,” she said. “To just feel that little bit of my research that my genes, that my DNA, that my blood and my urine all became part of really scientific history, medical history, is an amazing feeling.”
“It’s something that I know I can tell my kids about. Who wouldn’t want that?”
Knowing how their experience was used to help others would change how people look at clinical trials. The result, Williams said, is that more people would be interested in participating. “In a few years, that next patient’s coming down the line who understands more about clinical trials,” and can go into it with a sense of being part of a research team, not just a passive subject.
“You’re part of a team,” Williams said. “That is really empowering, really cool, I would love that. Maybe someday.”
For the rest of the interview, please go to WCG’s website: https://bit.ly/2U9qzqu.