How the Self-BAT Started


Meghan Engbretson is an Auditor in the Office of Compliance and Oversight for the Canadian Cancer Trials Group at Queen’s University. While completing her Masters Degree at Queen’s, Meghan undertook a clinical project with Dr. Paula James.

Their project successfully transformed the ISTH-BAT (a common bleeding disorder assessment tool used by medical practitioners) into the Self-BAT, a tool used to help women with bleeding disorders assess their own condition without the assistance of a doctor or nurse.

We sat down with Meghan to discuss her work with Dr. James, as well as the trials and tribulations of the incredible clinical project that made the Self-BAT possible.

 

Hi Meghan! Why don’t you first tell me how you came to work for Dr. James?
I was in the second year of my Bio Undergrad Program, and I had emailed a couple of professors whose work I was interested in, looking for a volunteer position. I knew that research was the direction I wanted to go in, and I wanted to see if I could get some experience while I was still in school. Dr. David Lillicrap was one of the physicians who returned my email and was willing to take me on as a part-time volunteer while I was a student. At that time Dr. Lillicrap and Dr. James’ labs were together, so I started off there and I was assisting one of the graduate students with her research. It was not clinical research, but basic research. I was hired on as a summer student and as a fourth year thesis student, again, working in basic research. And when the time came for me to decide what to do next, I approached Dr. James, asking about a Master’s project. She thought that based on my previous work and my personality that a clinical project would be a good choice. Once that was approved, we started to get to work thinking about what we could do with a Bleeding Assessment Tool in terms of a clinical project. I was still required to do some bench work, so we worked that into the project as well.

So the clinical project that you ended up working on was looking at the ISTH-BAT and turning it into something that could be self-administered?
Yes! So what we wanted to do was take the ISTH-BAT and make it into something that people could answer on their own, because as it was it had to be administered by an expert, a nurse or physician or someone else trained in giving the questionnaire. We thought that if it became something that people could answer on their own it might raise awareness and save resources.

Can you tell me some of the steps you went through to convert it?
You would think that you could just take the ISTH-BAT and write it out a bit differently and give it to people to fill out – but that was not the case. You need to be able to ask the questions in a way that everybody understands. We tried, really, to just put it in layman’s terms; we aimed for a fourth grade reading level. Once we came up with a rough draft, we tested it on volunteers in the community who we recruited through a newspaper ad. They came in for a pilot testing session and immediately we identified several problems with it. People were not understanding the questions, and certain terms had people very confused. It was good for us to see, as we were coming from a scientific background and didn’t realize that terms we were familiar with weren’t easily understood by someone not coming from the same background. So we kept revising it over and over again until everyone could answer it without our help.

For each of these testing sessions you also had a focus group, did you not?
Yes. The focus groups were really great because we got a lot of really good feedback. And people were really engaged – I was impressed.  The volunteers really seemed to enjoy participating in this project, and it was cool to see perspectives from people outside of the project. That really helped.

In the the last few rounds, people really didn’t have any suggestions for improvements. Did you have to go through any final steps to make sure the Self-BAT was ready for use?
We tested the final version again with people who had taken it previously, which helped us to ensure it was reliable. We had patients who had already been diagnosed with von Willebrand Disease complete the Self-BAT to make sure it could distinguish between normal and abnormal bleeding as we expected it to.

So you finished your project and got your Master’s degree. How long were you here all together?
Two years all together. I started in May 2011 and finished in April 2013.

Have you seen the Let’s Talk Period website that includes the Self-BAT?
I saw it pop-up in my Facebook feed, one of my friends had liked it, and so I went on to check it out. I think it’s great. I’m very proud of the Self-BAT, and I’m very happy that it’s being used to raise awareness and that physicians in the community seem to be aware of it too.

Yes, so I understand you actually had a physician discuss it with you recently?
I was seeing a physician for something unrelated, but she asked me if I had ever had any problems with bleeding. And I said no, but I was actually involved in a project looking at bleeding issues. She said, “Oh, are you familiar with the Self-BAT”? And I laughed and said, “Well, actually, I worked on developing the Self-BAT as my graduate research project.” So, it was great to see that it is getting picked up as a tool and people are becoming aware that it’s out there, and it seems to be drawing attention to the issues surrounding abnormal bleeding. I’m very pleased.
You should be very proud of your work, Meghan! The
Self-BAT has helped, and will help, so many women with bleeding disorders. Thanks for sharing the backstory of the Self-BAT

Click here to read a published paper based on Meghan and Dr. James’ work.

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