Episode 14: From the Ground Up with BRCAinBC

In the second episode of this series with Jame Remocker, she shares what the BRCAinBC is currently up to, including their work advocating for population-wide genetic screening in British Columbia. She also shares about the vital community building that was needed for them to advance the mission. With the extensive leadership experience Jane has, she offers her advice for those looking to start doing work in their communities and highlights the importance of avoiding burnout. 

We are so thankful to have had Jane join us on the GOSH podcast and even more thrilled to see the important work she's done! You can learn more about the BRCAinBC here: https://www.brcainbc.ca/  

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca 

Where to learn more about us: 

Twitter - https://bit.ly/3jsViHM 

Instagram - https://bit.ly/3dRQsCF 

Facebook - https://bit.ly/3knUgOw 

Transcript

Introduction

Thanks for listening to the GOSH podcast.

GOSH stands for the Gynecological Oncology sharing hub and open space for real and evidence based discussions on gynecological cancers. We'll share the stories of guiding cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecological cancers. Our podcast is produced and recorded on a traditional unceded territories of the Musqueam, Squamish and Tsleil-Waututh nations. It is produced by the Gynecological Cancer Initiative, a province wide initiative in British Columbia, with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecological cancers.

Hi I'm Nicole K and I'm Stephanie Lam and you're listening to the GOSH podcast!

Stephanie

So the group has clearly had some remarkable successes over the last few years. I'm curious about what you have planned for this year. What is the group's vision for 2021?

Jane

So our vision catch enlarging and we realized that really the focus for 2021 had to be family physician education.

Nicole

Yeah, that's a great one to focus in on.

Jane

Yes, and we had actually addressed that in a limited way in early on in 2020, when […] from the hereditary cancer program wrote an opinion article which was published and it’s the family physician oncological network for newsletter, something like that and it was like a three quarter page article and then they had a hereditary cancer program had a little add on at the end and that was very nice, but we didn't get any feedback from that, although I understand it was people did read it and some people have received feedback.

So family, physician, education and of course as a lay community really with no traction we needed the physicians to drive this, so visiting and after our October webinar, we were actually contacted by a medical oncologist, she has a much more, much lengthier title, who had been at Memorial University in newfoundland and had done BRCA wanted to genetic screening and developed a quicker way of doing it and who had also done a had designed and 1/2 day family physician education an event that actually was here in Vancouver, I think in 2019 and she contacted me and said, I attended your webinar and I think I should be on your committee 'cause I can help you.

So she came on our committee in November last year or November January time and is a dynamic energetic person and she is one of the leads on the physician education.

Nicole

Wonderful.

Jane

She and another doctor are heading up the subcommittee that's working on for physician education.

We then have a subcommittee that's working on outreach to men, and we're planning a webinar for October. One of the men's groups in Vancouver approached us and said they would host, and we realized from our evaluation of the webinar, October that we're not reaching the younger generation.

Stephanie

Hmm.

Jane

So, uhm, one of the Hebrew schools we have a young woman on our committee and she said I'm going to talk to our parent advisory at the Tama Torah, which is the Jewish School on Oak Street, and they got back to us and said, yes, we'd love to do a webinar, and we'll host it, so there are no Saints.

That's going to be at the beginning of April and we’re very, very busy working on that. And again, it will have the same format.

It will be Katrina will do three posters that she puts up and talks about about the very basic information about the BRCA1 and two genes, the cancer risks and that you know, men and women can inherit. And you know 50% passed on to children and and that sort of thing. And then, uh?

The young woman who's on our committee will give her personal story. And I might give a little outline about Jeff because we hope that some of the young dads are going to be attending.

This will be marketed to all the Hebrew schools, what they call the supplementary schools, which are the after schools attached to the synagogues and federation is going to put it out first, I've got a great contact there, he's going to put it out on social media for us. Twitter, Instagram Facebook.

And then we have another education program which is called PJ Library which supplies free storybooks to families with young children, and so they're going to contact all their mailing lists.

So that's in the works, and it's keeping me very busy.

Nicole.

Got your plate full.

Jane

And I'm not sure what else there is to say. I mean, along the way we've met some interesting people we consulted with a doctor. Steven narrowed at Women's College Hospital in Toronto, who's doing a research into BRCA1 or 2 genes. But again, it's everything mostly focused on breast cancer.

Nicole

Hmm yeah this. Doesn't surprise me.

Jane

That breast cancer is much more prevalent than the other cancers, but in that story, the other cancers get missed.

Ovarian cancer is sort of way down on the radar, and men are missile entirely.

Uh, we also have met. Talked with a not in person but online. In our research, I have another amazing person joined the committee who's living here, but she's just spent the last, she's just retired from the Fred Hutchinson Cancer Prevention Research Center in Seattle, 

And spent the last 34 years designing research projects for genetic screening for underserved populations, and so she's come on my committee 'cause she's moved back near me. It's about six blocks from me. She's amazing, so she's helping me write block grant applications and letters of intent to funding agencies.

And uhm. Those two particular women, along with the hereditary cancer program staff and everybody else on my committee, have been. It's an amazing team and we so we now have the four subcommittees, and I, one of which is the group that's going to focus on outreach to men. The one that's working for the families, and the one that's then to do physician education. And that's what we're planning to work on this year.

Stephanie

That's amazing. Clearly you have a lot going on in 2021 now, so shifting gears a little bit and I know that right now genetic screening is offered to only certain people who have a specific medical history or family history, so this often means that someone in your family has to be diagnosed with cancer first in order to trigger opportunities for genetic screening.

So I know some researchers around the world have been looking at opportunities for our population genetic screening, where genetic screening is offered and made available more broadly across the population.

So Jane, I know you've had some great conversations about population genetics screening with our group, and I know BRCAinBC has just started to have some more great discussions about this, so I'm curious to learn more about what you have learned through this particular topic.

Jane

Uh, my researcher Betty got in, decided to research into cost effectiveness of genetic screening, and found her way to adopt around […..].I think his Imperial Hospital College in London.

I may not have that absolutely correct, and he's done a lot of research into the cost effectiveness of population wide screening for people with Jewish heritage and the results show that it finds 50% more mutation carriers than family history screening.

It's cheap and effective because it's very focused on which genes you're looking for and that when offered counseling prior to being genetically screened, 70% of people said no. I'll wait until I get my result and then if I need counseling, I'll I'll ask for it then, so that was interesting because at the moment the plan here is you get your pre counseling. And then you get screened and then you get your post counseling.

Nicole

Great.

Jane

So we are finding out some interesting things and he has offered to help us.

Nicole

Just amazing amazing Jane.

Jane

Said we can have a Zoom call and I can give you the benefit of my knowledge and give you a helping hand. 

Nicole

So wonderful.

Jane

But having gone from just doing one community event, which we thought we would do in memory of Jeff and tie up with a red ribbon and say we’re now working towards considering figuring out whether it be worthwhile having a stab at trying to get population wide screening for British Columbians in place.

Nicole

Have you encountered any other community groups in Canada that are doing similar work or or is are you finding that you're really the only group?

Jane

Not really, I'm I haven't done the research.

I'm actually in touch with a male genetic counselor in Toronto who's also involved in BRC, a one or two research to ask whether what the policy is for genetic screening in Ontario.

As I know my sister-in-law who lives there when she heard that she had to get genetically screened following the finding that her brother, my husband, was positive for this BRCA mutation phonedher family doctor and said she probably has the results since she'd already been screened when she had her children.

Nicole and Stephanie

Oh

Jane

On OHIP

So I haven't made that phone call 'cause I actually haven't had time. And as you know, once you start down these phone calls, it often takes many phone calls before you actually find the right person to talk to.

Nicole

Right, yeah.

Jane

Also, when you do email it takes time for people to respond so it's that's something I will do, and I'm hoping that this genetic counselor might have the answer for me, but he's also of course very busy, but he's offered to come and be the speaker at our men's group meeting.

Nicole

Oh wonderful.

Jane

Or he'll find us a genetic counselor here who he's worked with who would could do so.

We're still doing background research and we're figuring out now who to get money for from because this year what Katrina would like to do is do an animated educational video 60 to 90 seconds and just on BRCA one or two basics.

And that's an expensive.

The actual animation video can be anywhere from 10 to $20,000 and as one who has to work internationally, says Mum, you need to budget 50% of what you spend on the animation on marketing and don't spend too much money on the animation. It just needs to be good enough. Spend the time on the story and the marketing.

So that's really. A summary of kind of.

What where what we where we come from?

Where we've arrived today, uhm?

And I you asked me, you asked me some questions about why this was so important.

And I think it it became very important because of the lack of awareness in the community and the difficulty to find accurate information for British Columbians in Canada.

Stephanie

Yeah.

Jane

So that was one of the reasons.

And it's become apparent that there are barriers, you know, and there are issues around.

Insurance issues if you get genetically screened, but the federal government policy says, which says an insurance company can't refuse to ensure youth will give you life insurance or something if you have been found to have it genetic mutation not not necessarily BRCA. But in reality when they ask your physician for your medical history, what we've learned is they can look at some of the regular appointments you have and if you're getting regular screening. That or a regular for whatever might be with a skin specialist or with, you know, MRIs and mammograms, that is sufficient for them to deny you coverage.

If they won't say it's related to the genes, it's say because you're having regular screening.

Nicole

That's terrible.

Jane

Oh, it's just terrible, yes, but that's the sort of thing that we're uncovering that areas and and I don't, hopefully it wouldn't stop people getting screened because I think genetic screening is the key, because that allows each person to then become a self-advocate in the medical community for themselves.

Nicole

Mm-hmm yeah.

So important.

Jane

And that's really what we're about is, focusing on prevention rather than treatment.

So really, that's our primary goal and we need to meet reach out to men as well as women. And encourage them to take this seriously and discuss it with their doctors.

Stephanie

Yeah, yeah.

Wow, I'm like amazed that I'm speechless at of the work that you and and you know everyone on your committee has done.

I mean, I think it is very powerful and I'm I'm going back to your comment about the folks at the Hereditary Cancer program, saying how important that it was, you know, community driven.

And then it started from the community and you know, I'm really curious about that bit and kind of where you see the group going in terms of building more community around this. Of course, you all have kind of this connection through the synagogue and through your ancestry, but where do you see BRCAinBC growing in terms of more community building in the near or immediate future?

Jane

Well, that it's a hard question to answer. I mean, I think I'm, as an occupational therapist, I sort of think about where you know in terms of function, I'd like to have one of my patients be, but then you have to go back to where you are today and say what is the the just right challenge ahead of us because we have to go step by step.

So I don't know. It is obviously essential. We can be a driving force, but we can't do a lot of it.

Yes, we can because we don't have this, we don't have the money or the staff. I mean, when we're at a little volunteer community, we have Katrina as part time staff who's paid approx pay for approximately 2 hours a week to work.

And you know, she, we couldn't do it without her. So it is absolutely essential that we have knowledge of what we work with, knowledgeable professionals who have the reach that we don't have. And then we can come along and provide information about what we've done.

What I think I see us doing really. Is like a pilot. What are we doing? How effective is it?

I mean, I do believe that what we're doing here with some fine tuning could be taken across the country.

Nicole

Hmm yeah, absolutely.

Jane

And we know that health care is, you know, it's given to the provinces, and then they decide how they're going to spend it, so you know it means doing the background research to support, if we really want the government to fund in population by genetic screening because in the end it's going to save money in terms of, and it's been shown in some research that it happens, but it's not being shown here in Canada.

And I'm not sure how you go about that, so I would be relying on people like yourselves to also outreach and say you know, can we be thinking about this?

I think it needs the whole group to start thinking big and the Jewish community is a pretty tight community and supportive. And you know, we're thinking all the time of different ways to reach out to key organizations.

I mean, I think we have the two federations. The one for Great Vancouver month at Vancouver Island. They're well on board, I mean, every everybody is excited about what we're doing, and I think that was for me one of the most rewarding things last year was when I, I personally, phoned a all those rabbis around the province in the synagogues, so I mean, it's not that many or a central organization and talked to a key person there and not one of them said no, we we're not interested, they all said well, this is really important.

And yes it's not religious, but it's for our community and it will help everybody. So I had not one person say we're not interested in this and we don't want to be involved.

Nicole

Yeah.

Jane

And you know there are people in all communities who have money available to help finance things. For this grow it probably has to be taken over.

I'm I'm, you know I'm not young.

I don't think we ever envisioned growing bigger, but you know, I think we could stay small and still be effective and just work in tandem with the team players.

I mean, I'm a I'm a team player, I like that's how I like to work. I like to work, building consensus and working on projects that a whole lot of people are great.

Stephanie

Hmm, and that's so important. Certainly, yeah, I think I mean, that's one of them, you know, a major reason as to why we've been connected with you and your group Jane, you know at the at the Gynecological Cancer Initiative you know this is what it's all about.

It's about you know whether or not you you are a researcher or a clinician or a patient partner or a community based organization you know, these are the people that we should be bringing together and amplifying so that the work, can you know, have more impact, right?

Jane

And I think I mean, I, I you know, don't have all that, but I can be a good advocate and I've I've done it. I've I've been to the Ministry of Health in Victoria to advocate for autism because that would, and you know, I'm not afraid to do that, but I don't like. I wouldn't want to do it on my own. I want to go and I'm a great believer in good preparation. You need to know your subject. You need to have done your homework. You need to have the finances sorted out and correct. I have a great belief belief that if you give people accurate transparent information that they can absorb, they'll very often walk the walk with you.

I've done a lot of leadership in the community, none of it earthshattering. This this to me, is the most important thing I've ever done apart from working with my little children who were checking.

Nicole

Just incredible.

Jane

Yeah, and the best decision I ever made was to open my private practice.

And you know, leaving the institutional setting working in private practice.

Believe me, it's a lot more challenging than working in the institution because you're, you know your whole reputation is based on the last child and family who walk out of your door happy with the service they've received.

Nicole

Right.

Jane

Where the child has shown improvement. So that that's sort of where I come from, and I do think my background is an OT gives me a unique perspective in a way because as OTs were much more holistic in our treatment viewpoint.

We have maybe in my case, in Pediatrics per child at the center is the child who's been identified for the problems, but then the family is impacted and the the school is impacted and the community is impacted and in the middle of it.

This is the child.

So if you can help the child and the family develop skills and support them, well, actually amazing things happened.

Nicole

Hmm yeah, absolutely.

Jane

Yes.

Nicole

So one of the. One of the things we wanted to ask you about is, were there any learning lessons that you've had along the way in terms of, you know, going from your original vision to where you are today and thinking to you know anyone in the Community who might be listening to your story.

And thinking you know, wow, I really wanna.

I've got an idea of something that I want to start.

You know any lessons that you can give that you've learned along the way?

Jane 

Well, I think the the one lesson and the rabbi kept saying to us don't take on too much. Only take on you know maybe we we would take a year we took the year only take on what you think what you know you can manage and be successful at and then see where that leads you.

So it's like that. The just right challenge.

Which is what we call it in OT when when you're working with a child.

If you give the child the just right challenge, what you build confidence and then the child eventually want to take the child from where it says I can't do this or I won't do it because I'm afraid and I'll fail to a place where they say.

Oh, I can do this. And do you think I could do that?

So I think that's what my kind of philosophical little steps up and gathering around you people who have the skills that you yourself don't have. Cause we each come with a unique set of skills.

We can't do it all alone.

We have to do it within a team.

And I think our committee is blessed with people like yourselves coming to invite us to participate, and providing your viewpoint, I mean every all that sort of thing enlarges the vision.

Nicole

Yeah, absolutely.

Jane

Does that make sense?

Nicole

Yes it does.

Stephanie

Yeah.

Stephanie

Yeah, I mean it's so important what you're saying.

Jane

Yeah, and I. Also, yeah, I also believe in evaluation looking at what you've done and I actually that was how I always conducted my own personal practice as an OT was I, you know, worked with their child or I ran a group activity and I would go back and do reflection afterwards and say what went well? What was not so successful? And what would I do differently next time?

That's been a lifelong habit of mine.

Nicole

And I think that could apply to so many different things in life.

And you know, I think it's really easy that you know you come up with an idea and you think big picture.

And then it seems overwhelming and then you get bogged down with all of what goes into making that a reality and it. It I think that's easy for people to maybe move on or feel like I can't do it, and so you know, I love that advice.

If just starting small. Starting with what you can manage and then building from there.

Stephanie

Yeah.

Jane

And we had literally we had no idea that we would be thinking about, you know, population wise.

It's only it's probably three years ago. Four years ago I mean it's really.

Uh, my goal grew wuite quickly and the other advantage we have as a Community committee is we can move more quickly.

Yes, we can do things we're not constrained by policy and bureaucracy. We make our own bureaucracy.

And so if you if you yeah so we can actually do more in a simple way we can't do.

If that makes sense and we can add and subtract stuff more easily without making it before we make major commitments.

Stephanie

Yeah, yeah, that's so important.

Jane

So it yeah, the Rabbi was very, very focused, and I mean he's been an amazing supporter of us, the congregation rabbi at Beth Israel and it's you know.

I mean I he's very busy.

I just keep him in the loop.

I don't bother him but he's always focused on just do what you can manage.

Don't take on more and I said to Katrina, we have to be careful. We're pretty much with what we've got on our plate this year at our upper limit of what we mean fo well and not get burnt out.

Stephanie

Huh, yeah, that's really important to self care.

Self care is very important.

I mean, I think it's still amazing because when I first learned about your group, I was like, you know, this group must have been doing this for years. Cause you guys have seemed like your presence was so it seemed like it was so great and it was so like you've done so much already that when I was first they've been around for several years doing.

Yes, and then I just found literally just now found out when I was reading through your notes that you know it was only a couple years really in the last year or two that you've been doing this work, and I think those small steps have really helped to amplify, you know from the educational components to the knowledge translation and then now looking at the population genetic screening and everything you know, small steps to build it up, right?

Jane

And the other thing we had to be really honest about is that it was also very timely.

So genetics has exploded the the the treatments have changed.

I mean since Jeff died. You know, I sat in on a webinar put on by one of these research docs down at the Fred Hutch and what's available now what their researching and available potential treatments for prostate cancer is mind boggling.

And that's happened as I said, Jeff. Well, it will be five years in August since he passed away.

That's all happened since he passed.

So that's also, you know, leaping there are leaps and bounds forward, but again, that that underscores the importance of this in, you know, nobody will know about this unless we help spread the information we got to do the knowledge translation out to the general public that there are other options available.

And politically speaking, we we, our committee, gets a bit caught between the institutional healthcare system and the private healthcare system.

I mean, I've worked in private healthcare and in in hospitals and clinics run by, you know the government and so I I, you know, I know the upsides and the downsides of both the systems, but the two are necessary for each other.

Because the private systems can do the research and trial things, perhaps in a way more quickly than some of the institutions can, then we can work towards policy change.

Betty my researcher, she says, so we had to do this and this change.

Same with the other Doctor, he knows exactly the steps we have to take as stick.

It he laid it out, didn't he?

Slowly, slowly.

Stephanie

Yes, small steps are really important.

Yeah, well thank you so much Jane. I think this has been such an informative hour of just chatting with you and learning more about BRCAinBC and you know, I'm I hope our listeners will have the opportunity to, you know, go on your website. And learn more about your group and hopefully join in on some of the community building and community outreach that you and your team has been doing so wonderfully. So we'll definitely put in our show notes as well some of the links to BRCAinBC and share some of that work, so please feel free to check that out and and yeah, thank you so much for coming on and sharing your story and you know your amazing work and I hope you know that the gynecologic cancer initiative is definitely behind you and you know we look forward to all of the future collaborations that are to come.

Jane

Yep.

Stephanie

So thank you so much for joining.

And yeah.

Nicole

And thank you for doing this work.

It's incredible.

And I, you know, from what you've shared so necessary, so thank you.

Outro 

Thanks for joining us on the GOSH podcast. To learn more about the Gynecologic Cancer Initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca.