00:00:01 Intro
Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne-cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a province-wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers.
Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH podcast.
Hi, I'm Almira Zhantuyakova. I do behind the scenes work for the GOSH podcast. Today I'll take over Stephanie and Nicole's place as a host. And you are listening to the GOSH podcast.
00:00:03 Almira
All right. Welcome back to the Gosh podcast and this is our series about endometriosis. Today we have a Doctor Natasha Orr.
She’s a researcher at the University of British Columbia (UBC) with a passion for understanding and helping people with endometriosis and chronic pelvic pain. Natasha finished her PhD in 2022, where she studied central sensitization and endometriosis associated pain. During her PhD, she spearheaded the development of endometriosis educational videos and a workshop for people with lived experience of endometriosis and their loved ones. Now, as a Postdoctoral Research Fellow, her work centers on developing online resources about endometriosis and chronic pelvic pain for healthcare providers in training using patient-oriented research and user-centered design.
Her collaborative approach involves working with patient partners throughout each step of her project, making her research not only academically significant but also accessible and engaging for the public. Natasha's commitment to reducing the delay in endometriosis care and improving healthcare providers' understanding of endometriosis and chronic pelvic pain makes her a valuable contributor to both research and advocacy in women's health.
Her Postdoctoral work has received 3 grants to support project costs, a UBC Health Innovation Funding Investment award, a Michael Smith Health Research BC Convening and Collaborating Award, and a WHRI Catalyst award. She is also supported by a CIHR Postdoctoral Fellowship.
Ohh that's a lot. Thanks for joining us today. We are really happy to have an insightful discussion with you today.
00:02:13 Dr. Natasha Orr
Great. Thank you so much for having me.
00:02:16 Almira
Yeah. Thanks. So, to start, maybe just can you share a little bit about your personal journey and motivation to focus on endometriosis, research and advocacy?
00:02:30 Dr. Natasha Orr
Sure. Yeah, happy to. So, I did my undergraduate degree at Queens and during this time I had experience with research and really kind of fell in love with doing research. So, I knew I wanted to continue in that. And I also was most excited about my courses related to Women's Health. So, I knew moving forward I wanted to apply to grad school to do Women's Health research and UBC's graduate program is really unique. And then it focuses on Women's Health. So, I flew across the country and interviewed here with the research team.
And when I met the team and heard about the endometriosis research that this group does, I knew I was moving across the country and that's that was that. And I've been here ever since.
And so, as you may know, endometriosis is a condition that affects 10% of girls and women in an unmeasured number of gender diverse people and that's approximately 2 million people in Canada. And despite this, how common it is and the significant negative effects that it has on people's lives, it's still underfunded and under research. So, I’m just really passionate about helping improve care for people with this with this condition, and I also do have family and friends who live with endometriosis, so they also inspire me to continue this work as well.
00:03:50 Almira
Yeah, that's great.
That's really nice that you through all the way here to study Women's Health and that's really great. And I know you were a postdoctoral fellow at Co-supervised by Doctor Paul Young and another researcher. We had a Paul doctor Young previously in our podcast. He talked a little bit about his research, but can you tell us a little bit about your specific post-doctoral work?
00:04:26 Dr. Natasha Orr
Yeah, I'm really happy too. So, I'm really happy to be Co-supervised by Doctor Paul Young as well as Doctor Fauci Howard in the School of Nursing. And so, my research kind of stems from the fact that people with endometriosis often experience dismissal of symptoms due in part to the lack of awareness and knowledge of endometriosis among healthcare providers. And so, literature has shown that healthcare providers, including GPS nurses and gynecology residents are report that endometriosis and chronic pelvic pain are areas that they're not very comfortable managing, and that they don't feel they had sufficient education in. So consequently, many people experience significant delays to receiving diagnosis and care of endometriosis and with an average delay being approximately 5 years, but with some people reporting diagnostic delays exceeding 20 years. So, can you imagine having severe pain that might be outside of the period pain that might last years and still being told by your doctor, that that's normal? So, there's a clear need for more education, and that really led to my post-doctoral work to develop educational resources on endometriosis and chronic public pain for healthcare providers and training. So medical and nurse practitioner students, and we're using a patient-oriented research and user centered design approach.
And this work is really guided by an amazing steering committee that I'm so grateful to work with, which includes people with lived experience of endometriosis, student partners who are who are UBC medical nurse practitioner students, as well as educators, clinicians and researchers. And our team really guides every step of the research. So, they were all involved in the conception and design of the study. They're all Co investigators on the grants that fund this study. They all Co-create the study materials and they'll all be involved in the publications and other knowledge translation activities. So as a team, we kind of came together. We all knew that we needed more education on endometriosis and we're all really passionate about doing that. But we had a few questions that we needed to ask which includes “What information do we need to include in these resources? What format should we make the resources in? What do the students want?” So, we wanted to look at what the knowledge needs and gaps were. So, we performed a needs assessment survey of the UBC medical and nurse practitioner students to answer some of these questions, and the results from that survey are now informing the development of our educational resources. And so, we're creating a few different resources, but the main two are a video series as well as a virtual case-based resource using the cyber patient platform and the video series will kind of contain the educational content. So, the knowledge we want the students to know. So, what is endometriosis? What is the prevalence? What is the impact on people’s lives? How do you diagnose and treat it? So that'll be in the video series and then the virtual case-based resource will really allow for the practical application of that knowledge. So, its within that resource, it doesn't actually provide that kind of knowledge or content. It just allows for the students to practice. So together these resources have addressed many of the identified needs and suggestions from the needs assessment survey. And yeah, and that's a little bit about what I'm doing in my post-doctoral work.
00:08:06 Almira
That's really great and It's very powerful I think because as you said it involves physicians, students and like researchers and everyone patients as well. And it's really, I think multifaceted research that you're doing, it's really good, you're basically asking basically you’re tackling the problem. I feel like it's roots where the medical education starts to happen and so people and from the Med school physicians are aware could be aware of this of in the image uses and keep it in mind for the future as they go along the training.
00:08:50 Dr. Natasha Orr
Yeah, that's exactly the plan.
00:08:50 Almira
It's really that's really great. Yeah. Just tackling it at the roots.
About the project. I was wondering if there were there any challenges that you have encountered throughout the project? In the strategies you've employed to bridge this knowledge gap.
00:09:14 Dr. Natasha Orr
Yeah. So, That's a great question. So obviously there are there are challenges. So, in addition to the challenge of lack of education and we need more resources and education in general. So that's a challenge in itself. But another challenge is ensuring that the resources we create are relevant to the students. So, it's one thing for them to say, we need more knowledge like we need more information about endometriosis. It's another thing for them to actually use the resources, so that's something that we're currently trying to figure out. And so how we're getting around this or how we're mitigating kind of this challenge is by working with our student partners.
And so, these are people who have firsthand experience of the learning environment and the ways to improve it and they also help us ensure that the resources that we're developing are relevant to the students and we also have the information from the needs assessment survey saying what kind of format they want the resources in what they're more likely to actually watch or listen to. So that that's one challenge that we have. Another challenge is finding the time and space for this information to fit in the curriculum, so the resources that we're currently developing are going to be optional or enrichment material. They're not going to be added as core curriculum at this time, but the ultimate goal would be to increase the endometriosis and chronic pain curriculum, core curriculum among healthcare providers and training. So currently we're just creating these resources as optional enrichment. They're going to be for digestible and engaging to help, so hopefully these very busy healthcare provider trainees are able to absorb and bring this information forward to their future practice.
00:11:08 Almira
That's great. Yeah, it must be a great challenge. The curriculum is kind of already full all right probably that's important work because it needs to be done and learned.
00:11:17 Dr. Natasha Orr
Yeah.
00:11:23 Almira
Great. In terms of patient partners that are involved in your work and you're in your PhD work as well, how has the involvement of patient partner shaped your project and what role do they play in your advocacy efforts?
00:11:44 Dr. Natasha Orr
Yeah. So, as I mentioned our all of our team members play or contribute to each stage of the research. So that includes conception, design, developing materials, etcetera. So, for example, specifically when we're thinking about how our patient partners contribute, when we created the content for the virtual case waste resource we needed to answer a lot of questions. So basically, we had a very long list of all the potential questions that the healthcare provider could ask this fake patient and we needed to provide answers to all of those questions. And so, our patient partners were incredible at providing helping us to answer these questions because it's from their own perspective as people who have lived with endometriosis. So that's one way that they've control needed another way that our patient partners contribute to this work is that they share information about what they hope the physicians would learn, what they wanted their physicians to say to them, for example. And so that all that information is being included in the resources as well. And an example of what I mean by that is they wanted the physicians to validate their pain. So, in the resources at various parts of the resources we're including kind of points that say don't forget to validate your patient’s pain. This is a way you could do that etcetera. So that's another way that our patient partners have really helped guide this project and when we go into our KT part of this project, they'll be helping us ensure that the research results are shared in a way that's understandable to the Community as well before we share that information.
00:13:32 Almira
Yeah, that's really great because eventually the people who will be receiving here the people who are so eventual consumers of all this work is the patience and knowing their perspective, what they think is needed is also really important.
Yeah, along the way as you mentioned, there is probably as there is a lot of misconception about endometriosis in the society and probably among healthcare providers that you're trying to tackle as well. And in your experience what are the common misconceptions about endometriosis in public or physicians, or anywhere basically.
00:14:20 Dr. Natasha Orr
Yeah, a common misconception is that endometriosis is just painful periods, and unfortunately this is sometimes thought not just of the community but also of healthcare providers who think this as well. So, although painful periods are a very common symptom of endometriosis, endometriosis is the complex systemic condition that is associated with various symptoms, including painful sex, painful bowel movements, chronic pelvic pain, as well as infertility, fatigue, decreased, psychosocial well-being, as well as others. So, it's really important to consider multiple symptoms and factors and not just focus on painful periods. So, in my work moving forward and the resources that we develop, we're going to be ensuring that we include kind of a whole-body approach to the multiple systems and symptoms that endometriosis could be associated with not just painful periods.
00:15:20 Almira
In terms of along the lines of public awareness and tackling the misconceptions I know, two years ago you started a thread on Reddit about endometriosis or you and your group your lab, and until this day, it already has around 250 comments people ask you about endometriosis, about their experiences, perhaps, and basically people have a lot of questions and I see that you and your team answered a lot of those questions and I was just wondering how did you come up with this idea? And I feel like this is really great for a person, let's say somebody who is looking for just advice. It's kind of accessible, more accessible for people to sort of access this information because Reddit is kind of a popular a platform for people. Yeah, to discuss things and just was wondering, how did you come up with the idea?
00:16:33 Dr. Natasha Orr
I personally didn't come up with the idea to be quite honest with you, but our team really values knowledge translation and working with our patient partners and giving back to the community that we're trying to help. So it was, it was an idea of our team to kind of use Reddit as a platform because it, like you said it's really kind of widespread. So, it gets a lot of engagement. So yeah, we were really excited and happy to be part of that and answer as many questions as we could in that in that short time frame.
00:17:03 Almira
Well, the great thing about Bridget, I feel is it's anonymous and some people if like it's sense, it's a sensitive topic, right, in endometriosis and like Women's Health in general has been not talked about for a long time and having sort of an opportunity to ask a question anonymously and get an answer from like an expert is great, I think, yeah. Great work.
So, in terms of your again team, you navigate like academia, healthcare sector, education and public engagement, and how do you navigate all of that? It's kind of all different spheres, right? It must be at times challenging to sort of keep all these things together and working, I was just wondering how you navigate that?
00:18:03 Dr. Natasha Orr
Yeah, that's a great question. And again, I'm going to bring it back to my incredible team that I have the opportunity to work with and it and it really helps to have a multidisciplinary team with people from each of these different communities that kind of really help ensure that our research that we're producing is disseminated in a way that's understandable and meaningful to the people with endometriosis.
So, we do use, or we are going to use multiple knowledge translation strategies that will include academic publications and presentations that will target our healthcare and research colleagues. And then we'll also be doing some community outreach as well. So, posting on social media for example, making late summary reports and sharing that around too, so we're kind of using multiple methods to target different communities, but together as a as a multidisciplinary team, we'll kind of all work together to create those different knowledge translation activities.
00:19:05 Almira
Yeah, tackling the problem from different angles, I guess.
00:19:09 Dr. Natasha Orr
Yeah. And as a team, that's how we like to do it.
00:19:15 Almira
Yeah, I think we have couple of last questions. So, in your opinion, what steps can be taken to reduce the delay in endometriosis here and how can healthcare providers be better equipped to recognize and address chronic pelvic pain?
00:19:37 Dr. Natasha Orr
There’re multiple factors that contribute to the delay in diagnosis and care of endometriosis, but lack of education among healthcare providers is it plays a key role. So, my research kind of aims to use a user centered approach to develop resources that address these knowledge needs on endometriosis and chronic pelvic pain and to help healthcare providers better recognize the symptoms and hopefully contribute to more timely diagnosis. And endometriosis affects multiple systems, and so multiple specialties may be involved with endometriosis care that includes family medicine, gynecology, emergency medicine, gastroenterology, etcetera. So, we're kind of targeting the students before they branch into these specialties. And hopefully that will allow us to better be equipped all these healthcare providers of all specialties to be more aware of endometriosis symptoms.
00:20:37 Almira
Yeah.
OK, great. I think just a piece of advice that we want to hear from you as an advocate and researcher. What would you advise as a person also who work with endometriosis patients and patient partners with endometriosis? What advice would you give to the individuals living with endometriosis and just being diagnosed with it and perhaps being dismissed for a long time out by health care system.
00:21:18 Dr. Natasha Orr
Yeah, I guess I want to first say that like your pain is not in your head. We do believe that this pain is very real and we're working very hard to try to increase the education and of healthcare providers. So, it reduces the dismissal that we know goes. And what I can say which I know is not excellent advice, but to try to be your own advocate as much as you can with trying to get the care that you deserve, because your pain is real. Another thing I do want to say is if you have the capacity to participate as a patient partner in research, your experience and perspective is incredibly valuable to ensuring that the research is that we're doing is meaningful and relevant to people with endometriosis, and you can follow me or the NBC Center for pelvic pain and Endometriosis on Twitter or Instagram for more information about endometriosis and about our research studies as well as any calls that we have looking for patient partners, we do post them on social media often. So, you can have a look there.
00:22:32 Almira
Yes, great. Thank you, Natasha. And we will link all the links to the websites, to the to send them to your pelvic pain lab in the description and we will tag them in all our social media. So yeah, I think that was my last question.
Thank you so much for this insightful conversation and for all the work that you and your team are doing to increase the awareness of endometriosis and improve the care.
Yeah, I think that is our last episode series in in the series about endometriosis, but I'm sure we'll have plenty more in the future, but yeah.
00:23:20 Dr. Natasha Orr
Thank you so much. Thank you for having us and for letting us share about endometriosis.
00:23:26 Almira
Thank you. Yeah, have a have a wonderful day then.
Yeah, bye.