WFH NETWORK

Let’s Talk Period: An Interview with Paula James, MD

As the World Federation of Hemophilia (WFH) gears up for World Hemophilia Day 2017—and its theme of women and girls affected by bleeding disorders—the WFH had the pleasure of sitting down with Paula James, MD, an academic hematologist based in Kingston, Canada, for a question and answer interview.

She is the Medical Director of the Inherited Bleeding Disorders Clinic of Southeastern Ontario and the Women and Bleeding Disorders Clinic at the Kingston General Hospital. James is also a clinician scientist with a major focus on bleeding, von Willebrand Disease (VWD) and issues related to carrier bleeding. The WFH is very proud to have her on its von Willebrand Disease and Rare Bleeding Disorders Committee. We are also very proud that James is one of the first grant recipients of the WFH Clinical Research Grant Program.

James is now working on a project called Let’s Talk Period which has the objective of increasing awareness of the signs and symptoms of bleeding disorders. The Let’s Talk Period website offers a self-administered bleeding assessment tool (Self-BAT) that helps give people more information and advice about their bleeding and guides them toward the support they need.

During the interview, James was able to provide us with rich insight into the issues facing women and girls with bleeding disorders. The reality, she explained, is that many women are left undiagnosed and are not getting the treatment they need. Especially when it comes to menstrual bleeding, it is difficult to make the distinction between what is normal—and what is abnormal and requires additional attention. The social stigma surrounding women and girls talking about their period is another barrier in proper diagnosis.

The following is an excerpt from our interview with Paula James, MD, where she shares her experiences regarding Let’s Talk Period and the positive impact it’s having on the bleeding.

Paula James

Q: Why did you decide to study women and bleeding disorders? What interests and motivates you about this subject?

A: My interest in women and bleeding disorders started with patient interaction. It became blatantly obvious to me very early on in my career that women were struggling. In some instances women were being cared for properly, but in many instances they weren’t. I realized the frustration around the lack of recognition of the issues affecting women and I wanted to be part of the movement, to make people more aware of the issues at hand and to provide better diagnosis and care for these women.

It’s not hard to treat women with bleeding disorders—in fact it’s actually quite easy. It’s not complicated medicine; we have a whole list of effective treatments we can use. What’s important is that we make sure we are identifying the right patients and getting them to the right clinics so they can be cared for properly.

Q: Can you tell us more about the Let’s Talk Period Project?

A: I had the general idea for Let’s Talk Period five years ago. I was involved in developing bleeding assessment tools—also known as bleeding scores—which quantify the kind of bleeding that patients are experiencing. A lot of work went into validating an expert-administered bleeding assessment tool in primary care offices in Kingston, Ontario, with the goal of increasing referrals for bleeding disorders. Unfortunately the referrals didn’t happen. We still don’t recognize how often—when a woman says that she’s having problem with her period—that the underlying problem is a bleeding disorder. We decided to go to the general public and put knowledge in the hands of people who might be suffering with symptoms. We took the expert bleeding assessment tool and turned it into something that could be self-administered. This was an evolved optimization process which included many rounds of revisions using feedback gathered from focus groups and from the way patients filled out the tool. We wanted to ensure that the bleeding score from the Self-BAT would be the same as with an expert administered tool. We are now able to provide people who complete the Self-BAT with a printable version of their results. If they find out that their bleeding is abnormal, there is a recommendation to speak with their physician about any concerns they may have.

We decided that we would use the internet—and especially social media—as a platform to get the word out. The website launched in May 2016 and the Facebook and Instagram pages launched in September 2016.

Q: What has been the response from the public? When the WFH shared your site on our social media channels the community reacted strongly with comments and shares.

A: I’ve been blown away by the response. I never fully understood the power of social media, especially as a knowledge translation and research tool. I knew it was an important topic, but didn’t realize that there would be such an appetite for it.

There has been a steady growth on the website and on social media. As at March, 2017 there have been over 9,124 hits on the website, 1,154 people have taken the Self-BAT and 515 have an abnormal or positive score. Our Facebook account has 587 followers with a reach of 80,344 people. Our Instagram account has 82 followers.

I would never have anticipated the global reach of doing this project—the hits on the website are from 83 countries.

Q: What do you hope for the future of the Let’s Talk Period project?

A: I really would like to close the loop with the site. Right now, I don’t know anything about what happens to people who take the test and have an abnormal score. Locally we would like to pilot a project where individuals in my catchment area would be invited to participate in a study that they would have to consent to and this would fast track them to our clinic for assessment and diagnostic testing. At the end of the test, we would like to build in a link to local clinics as much as we can, so people can have an idea of where they can get specialized care. We would also like to create links with practitioners who are willing to see patients and make the diagnosis.

Q: Do you have a message that you would like to share with the global community?

A: The message that I would like to share with the global community would be the following:

To our community and colleagues, I would say this: Let’s Talk period has been a far more powerful tool than I ever imagined. It is a reasonable way to reach individuals who are suffering with bleeding and don’t know it.

To the general public, I would say this: pay attention to your bleeding symptoms and seek help if you are concerned. Your symptoms can be easy to treat and there are lots of great options for treatment.

Message from the WFH:

To learn more about the Let’s Talk Period project, please visit letstalkperiod.ca. We encourage you to share this site with your network, to help increase awareness of women with bleeding disorders.

The WFH would like to thank Paula James, MD, for taking the time to share her experience with us on this important project.