Accessing Treatment and Health Information

During this broadcast:

Kim and Shelley welcome Dr. Lucie Kocum to our program:
Dr. Lucie Kocum, PhD is a research scientist and mother of two daughters living and teaching in Halifax, Nova Scotia at Saint Mary’s University. Born in Ottawa, Ontario, Lucie is the daughter of Czech immigrants. During the holocaust, her family protected people from harm, risking and ultimately sacrificing their lives. Decades later, her parents narrowly escaped the Soviet Invasion of 1968 and made Canada their new home. Her heritage forms the basis of Lucie’s interest and passion in social justice and psychology. Throughout her academic career, Lucie has lobbied for the rights of others through her activism in unions and other advocacy associations. Through her research, she seeks to empower women through meaningful changes to the status quo, particularly in the workplace. For the past 5 years, Lucie has been focused on creating a better life for all women with breast cancer. Her latest challenge is protecting the livelihood of these women. Lucie is the project director for the Partnership for a Healthy Workplace Response to Breast Cancer which is based in her Work Wellness Lab (workwellnesslab.com).

Shelley Ann Morris (host): ...Speaking of making changes [referring to a song that just finished playing], we are so honoured to having joining us all the way from Halifax, Nova Scotia, from Saint Mary’s University, Dr Lucie Kocum.

Dr. Lucie Kocum: Hi there, Shelley. How are you?

Shelley: I’m good, good. So honoured that you’re here today to talk about the groundbreaking research that you’re doing. I do have some questions and I do hope that you’ll shed a lot of light on an issue that we don’t often talk about. Because unless you’re in the disabled community, you may not face it. So, first of all, perhaps you could tell us about the work that you do and the roll that you play in the research that you do.

Lucie: Okay, sure thing, and I just want to say that it’s a great privilege to be here. So yeah, so my work - what i’m really, really interested in - what my research focuses on is barriers to workforce participation. So it’s a broad category but specifically over the past 6 years my colleagues and I - Lynne Robinson at Dalhousie and Catherine Loughlin here at Saint Mary’s University - we’ve been looking at the return to work of breast cancer survivors. And why we’re focused on breast cancer is because folks may not know, although the cure rate, or treatment for breast cancer has come a long way but women with cancer have among the highest unemployment rates. And so, we’re focused on figuring why that is. What we’ve discovered is, of course women are still marginalized in the workplace, still work in precarious employment. So, precarious meaning part time work, work without benefits... and so a cancer diagnosis among women who are in these spheres of employment is especially hard.

Shelley: Mhm, yes, absolutely, they already face barriers and when they do get a cancer diagnosis it just exacerbates the things that they go through. Tell me, what got you interested in this particular area? I know that this is something that you are very passionate about, what got you started on this journey?

Lucie: Well, I want to say what got me really interested, so, just workforce participation in general - I am actually the daughter of two disabled parents. And so it’s been quite a passion of mine to just figure out you know, how, what are the barriers to just workforce participation? Work is quite a source of - it’s a social role we have, as a worker, which gives quite a source of pride, it fulfills a lot of psychological needs we have. And you know, just growing up and seeing various barriers, you know systemic barriers, that really I thought, do they really need to be there? Does that particular barrier need to be there? What can we do to figure out how to, and not just how to, not just to overcome the barrier, but how about we not put it up in the first place? How about we look at the system, take a systemic approach? So, look at all the different participants in the system and start to create workplaces that actually don’t have the barriers to begin with.

And one thing in our research that we discovered - so October is Breast Cancer Awareness Month. And we were interviewed by the Disabled Women’s Network of Canada and we were asked specifically to speak to breast cancer in the situation of women with disabilities and deaf women. And to be honest with you, I thought my goodness, you know, I am an expert in barriers in the workplace. I had to think about how well, wait a minute, how does cancer affect women with disabilities differently? And my team of students and I went to work just researching okay, what are the different barriers? And oh my goodness, we were really shocked. We were really shocked to find out that just individuals with disabilities in general have a higher cancer… the effects of cancer are much worse, individuals with disabilities will die of cancer at a higher rate than individuals without disabilities. We didn’t know, I didn’t know that and I was quite shocked to learn that.

Shelley: What sort of barriers might they face? Like you know and I know some of the barriers, but for those who don’t have disabilities or those who aren’t close with people with disabilities, what sorts of things might people run into?

Lucie: Well, one of the major things, we know that early detection saves lives. And just simply, I say simply but it’s not simply, just access to a mammography machine that is actually accessible. So there are mobile clinics, there are clinics, breast screening clinics all over but lots of those machines are not adjustable, so someone with mobility issues who cannot stand up actually has to make a special appointment at a hospital in order to get screened. So even just screening, the physical equipment involved in screening is a barrier.

Other barriers would be, where we’re focused now in terms of health, on health promotion, and that’s fantastic, that’s great as a society, but the information that is produced that is actually not produced unfortunately in an accessible away. So, just having information, you know. Individuals who are visually impaired... certain information is not going to be useful or seen, obviously. Deaf women face a lot of barriers in terms of information being produced in a format that they would be able to benefit from, as well. So access to information, the way that materials are produced and also simply just the equipment itself those things can be great, great barriers. And the difference is significant between screening of deaf and disabled women, for example, compared to women who are not disabled.

Shelley: It’s unbelievable. We don’t think about it, but when you were talking about it, I know we sort of joked about this with me being visually impaired we talked about things not being accessible, when you see a commercial, let’s say, and they say “call the number on your screen,” now they’re trying to phase that out, but still some slip through. Now, interestingly enough, last night, I was at my get together with technology group - I belong to a tech users group here in Ottawa, and we get together to talk about how to use technology. And I was talking to one of the people in the group, who has had quite a lot of dealings with the health care system in the last year or two, and I was telling her about the subject of today’s show. She mentioned different times, and now, she has difficulty with print material and she’ll say that she’s received letters in the mail from specialists and it’ll say, you know, what time your appointment is, what date and what location. But all that information is handwritten, so it’ll have a form letter - you have an appointment with blank and that was filled in and you’re going to go this time, this day. Now, unfortunately handwriting doesn’t scan as well using an OCR, using an Optical Character Recognition scanner, so she ends up having to get someone to read it. You know, do you really want other people reading the most intimate details of your life?

Lucie: Right, it’s a privacy issue.

Shelley: Exactly, and speaking of that, the other situation that she finds herself in, and we all go, when we go to the doctor one of the first things we’re asked to do is oh, please fill out this form. Well the form is in a format that you can’t read and then if, and she said this last night, she said if somebody isn’t so harried and hurried and they have the time and the patience to help her - she said sometimes that can be very hit and miss, other times people are quite nice - but sometimes it can be difficult to get either a receptionist or a nurse, or somebody to fill out that form with you. And she said sometimes you’re asked to do that in a public waiting room. So here you are, spilling out all of your information as someone is writing it down and it can be a bit of privacy issue. And then the third thing, is we all know how difficult it is to get appointments with specialists and if you’re using parallel transit - try booking an appointment and we all know that sometimes doctors appointments - you have a 3 o’clock appointment and you make it in at 4 - and you know, if you’ve got your parallel transit booked on either side of that apt., well you’ve missed it so there’s some real fundamental barriers all around and it’s really good that they’re being talked about.

Lucie: And certainly, I was going to say the other issue with parallel transit is that it’s not only on one side, it’s not only the individual coming in, but also it’s the physician’s office or the clinic, they tend to run overtime, so you may actually miss your transportation out because the clinic itself you know, as they do, they tend to run overtime. So, in terms of even just being sensitive to that, it’s something that clinics just simply need to be aware. I think, you know, obviously folks go into health care service professions to help people, they like to help people as much as possible, and it’s just in terms of eliminating some barriers, there are some simple things.

Like simply find out, does your client have particular needs? Find out, ask ahead of time, instead of being surprised at the appointment by certain needs that are certainly not a surprise to the individual, so these things shouldn’t just be dealt with in a haphazard fashion. Folks happen to have time, time is the big one. This five minute in-and-out system, well, quite frankly, I don’t think it works for anybody, but especially for people who need extra time. I mean just extra time, if you have an issue with mobility, just extra time to allot for using the examination table, just extra time to allot for having forms explained. I mean, if you are an individual with intellectual disabilities, well first of all the forms may not even be in a form that is most accessible to you. But to have that extra time - it’s not even extra time, it’s just the time needed to have those forms explained and the procedure explained. Even folks in the deaf community who don’t necessarily, they may be using ASL [American Sign Language] to communicate, but it’s possible that the English written language can be a barrier sometimes because ASL and the English language have nothing in common. So even that, even to simply be aware that your services, the way you provide your services may not be ideal for, or even understandable or most useful for individuals with disabilities.

Shelley: That’s so true, and this is another thing that we got talking about last night and of course if somebody is using ASL interpreter, it’s going to take a message longer to be relayed. And again, there are some terms in medical parlance that don’t transfer over very well from one mode of language to another. And just trying to describe the process of a mammogram, I can only imagine what that would be like for somebody who uses American Sign Language and trying to explain what that’s all about. So yes, being more aware is very, very important.

Just incase anybody is just joining us, I am in conversation with Dr. Lucie Kocum who is researching returning to work, the disabled community, and those who’ve had a cancer diagnosis. We’ll make sure to put the article or link to the article up on our website, there was an article written for the DAWN, for the DisAbled Women’s Network and there was also a link to a really interesting piece about what people with disabilities can do for themselves, as advocates.

You know we’ve been hearing that term used a lot now - you’ve got to be your own advocate. Well, when you have a disability, or two, you’ve got to be, that’s even moreso. Can you give us some pointers as to what people with disabilities might do help themselves navigate the healthcare system?

Lucie: Oh absolutely, and I do want to definitely point folks to a paper written by the DisAbled Women’s Network of Canada called, What we know about Access to Cancer Screening for Women with Disabilities and Deaf Women, and I would say that it actually would apply rather broadly as well. But yes, obviously acknowledging that the system needs to improve and that clinics can do a better job in terms of communicating.

Folks with disabilities can take some matters into their own hands in terms of preparation, things you can do to prepare. So for specifically say for a mammogram, try as much as possible to prepare ahead of time to ask your family doctor, to say okay well how do I prepare? How do I dress for this mammogram? How do I prepare if I use a wheelchair or scooter? And also, just making sure ahead of time, by the way have you thought about the fact that I would need the machine adjusted? So, the clinic you’re referring me to, does it have a mammogram machine that’s adjustable? Because you certainly don’t want to go through the making of an appointment, the getting to the appointment and then to find out the machine is not even adjustable for you. Also how long is the appointment and can I have more time? I may need more time for these reasons, so express the needs. Not only to the family doctor who can perhaps broker some of these needs, but ask for the clinic’s number, call the clinic, you know, ask them. Now this of course would assume that the clinic would be set up to receive questions in various formats as well. But ask, let the staff know that - can you sit upright, for example with or without assistance. These are the things that you can alert the clinic to ahead of time, so that they can make the time for you.

Shelley: That’s so true, and even just knowing where the clinic is, that’s one of my biggest challenges because if I’m being referred somewhere but it’s out on a road that might be very, very hard for me to navigate, I would need to know that so that I could arrange transportation. And just the whole logistics, where you and I could easily get ready for a mammogram, but somebody that has dexterity issues may have some challenges there and I think you’re right, it’s very important to let people know ahead of time and also to ask how long the appointment is going to take, what can I expect? Sometimes a test may include having to go to a washroom so you want to make sure that the washroom is accessible too. We’ve all known washrooms where there’s that one or two steps that you have to navigate and if you have some mobility issues you can’t, it may be difficult for you.

So there are all sorts of things, there was that excellent document and we will put the links up on our website, because the more you know ahead of time, that goes for women and men, and everybody really, and the more prepared you are the better you are going to be. Now there have been some strides, there have been some positives, I think things are changing. Have you seen any positive changes at all?

Lucie: Well certainly in terms politically, so you know, now we have a public consultation on a Disability Act, thinking now back to the workplace and I’m certainly contributing my comments there. In terms of people in the workplace having a right, and it being a legal right to accommodation in the workplace, so the law would be there and the law would be rather clear. Sometimes how that law is interpreted by individual workplace, that’s where it becomes fuzzy and that’s where some work needs to be done. So how do we actually enact these rights that individuals have in the workplace? So, I’m thinking back to my focus on women with breast cancer, I’m now extending my scope to include women with disabilities, already women with disabilities, individuals with disabilities are marginalized in the workplace. Then you have on top of that, getting a diagnosis like cancer... this does not and it should not spell unemployment for anybody, you have a right to be accommodated, you have a right to be ill. So, yes we have laws in place but we need to help employers and help individuals with disabilities negotiate that process. To allow the person to be ill, to return to work and return to a culture that is accepting and accommodating. So, we have made some significant strides in that way but also there is just a lot of work to be done on the specifics on how that’s going to look.

Shelley: We’re getting there.

Lucie: And what we’re actually looking for when you’re asking about strides, there are definitely workplaces who are getting it right and there are individuals who are having a really positive experience in terms of their return to work, and we are actually looking for those in terms of serving as examples. So we call these bright spots, we’re looking for cases of individuals with or without disabilities, with a breast cancer diagnosis where they’ve had a positive return to work experience where you wouldn’t necessarily expect it. So there are occasionally, you know, the corner store, the person does not have benefits, the person is working part time. Yet somehow, that workplace has figured it out, to accommodate that person’s return to work. We want to find those examples to see how it is people are making it work under really hard circumstances, to serve as examples to others. And not only that, we have a partnership, so the partnership is national, we’re working with not only with DAWN Canada, the National Institute of Disability Research in BC, we’re working with labour lawyers, trade unions, big and small business, researchers across Canada at McGill, BC Cancer Agency. We have a huge system that we’ve put together, so we want not only find these bright spots, but to then engage the system and say “Okay! Well, if these folks were able to figure it out, how do we engaged all different parts of the system?” Oh, I’m forgetting insurance companies. I mean, we have everybody in this system represented. How do we take these bright spots and figure out something more systemic or systematic in terms of applying it to workplaces more broadly?

Shelley: And there are plenty of resources for employers who want to accommodate the workers that they have, I think some of them were mentioned. The information and the resources are out there, you just need to find them and that’s so important. Lucie, I want to thank you so much for taking time out of your busy day, I really appreciate that.

Lucie: Well thank you so much Shelley, it’s been a real privilege.

Shelley: Now, when I asked you to choose a song, you chose a really great iconic Canadian song, Bobcaygeon by The Tragically Hip. And I think there was a line in there that was especially important I think about the bright spots and the importance of the people who are getting that right. So we are going to play your song, and I would just like to thank you again so much for talking to me today and getting the word out here on Welcome To My World.

Lucie: Thank you so much Shelley, take care.