Kath

Kath was diagnosed with breast cancer, and has had surgery and chemotherapy. She is glad to have been a part of the 100,000 Genomes Project and contribute to research, but she believes that some aspects of communication with participants could be improved.

Kath was diagnosed with breast cancer and underwent several treatments including surgery and chemotherapy. She became involved in the 100,000 Genomes Project following her diagnosis when her doctor gave her a leaflet about the project and asked her if she would like to participate. Although she read the leaflet and later agreed to join the project, Kath felt strongly that there should be clearer information given to people who are asked to become involved at this stage, and that the leaflet could be written in plainer English. She suggested that many people find it hard to understand what the project is about, and having a healthcare professional explain the project before participants join would encourage more people to agree to be a part of it. She felt that this is particularly true after a cancer diagnosis when many people may be concerned with their health and may not think to read the leaflet.

Kath spoke positively of the nurses coming to her house to talk about the project, and felt that they did a good job explaining what it involved and what she was consenting to. It was the projects aims, to improve treatment, which she remembered and focused on, more than the details of how her information would be used. She did not feel that being involved in the project carried many risks, but expressed hopes that her tissues would be used for research, and not for commercial gain.

Kath suggested that some things, like why certain people are asked to be involved in the project and not others, should be better explained. She had experiences of talking to other people who were disappointed not to have been asked to participate in the project, and they too were not sure why this was. Kath also believes that those involved in the project should be given information about the results, instead of being left dangling in the air. She was disappointed not to have received more information after donating her blood and tissue, and would have liked to have known a bit about her genetic and health results and how the samples were being used. She was also interested in the general progress of the 100,000 Genomes Project, and suggested that participants should be sent an annual update on its progress.

In spite of feeling that there could be an improvement in some aspects of the communication of the project and its results, Kath spoke of being glad to have been a part of it. Although she feels that the project may not benefit her personally, she spoke of wanting to contribute to research and help future generations.

Kath gave a blood sample and had a saliva sample taken. She hasn’t had any results.

Age at interview 65

Gender Female

Age at diagnosis 64

What did you have to do in terms of, apart from doing, doing the consent form, what did you have to do in terms of taking part? You donated some tissue samples?

Yeah, that’s all. I’ve only donated tissue. That’s all.

Okay. Blood samples?

Yeah, I, they did blood samples when they, they did that when they came here.

Okay.

Yeah, they, and they did a mouth swab as well, yeah.

Okay. And were they explaining to you why they were doing those, the blood, taking blood and doing the mouth swab?

Yeah, yeah, it’s all to do with the DNA, that is, yeah.

Okay. And what, did they talk about you getting results, or not, about this?

No. That were another thing that I were disappointed about. You don’t get no results or anything about, you don’t, once you’ve given your blood and your tissue and everything else, you don’t get no comeback from it at all. And that’s what disappointed me as well. I were a bit disappointed about that.

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Kath wasn’t told anything about getting results and although she doesn’t expect personal results, would have liked to have some sort of update about the project as a whole.

Age at interview 65

Gender Female

Age at diagnosis 64

And what, did they talk about you getting results, or not, about this?

No. That, that, that were another thing that I were disappointed about. You, you don’t get no results or, or anything about, you don’t, once you’ve given your blood and your tissue and everything else, you don’t get no comeback from it at all. And that’s what disappointed me as well. I were a bit disappointed about that.

You would ha-, so they didn’t say you might get results in a year or two years-

No.

-telling you-

No.

-about-?

That’s, I was a bit disappointed about that, you know. They didn’t say that I’d get any results from it at all. They didn’t say nothing about that. So I just understood that they took that for their research and it, and I weren’t gonna get nothing back from it. You know what I mean?

[mh-hm] Would you like to get a letter explaining?

Yeah, I would, yeah.

Okay.

I think most people would actually.

Okay. And that’s just for your own sort of xx?

For your own, yeah, that’s right.

Okay. Okay, so you have no results?

No, no information at all really.

Okay. And why would you like to have that information?

Well, I’d be interested to see what they’d used it for and what sort of things they were doing. You know what I mean?

Okay.

You know, I think most people who, who joined it would be interested to see what happens to their blood and, and their, their tissue, what it went for and what they did with it and-.

So you would like a kind of update on what they’re doing?

Yeah, yeah.

Okay.

I mean nothing, nothing too elaborate. Just basically know, you know, what they did with the, your blood and what they did, why your tissue went there and, you know, things like that, just general things really.

Okay. Just to send sort of a letter saying-

Yeah, that, you know-

-this is where we are at this moment?

Yeah, yeah.

Okay.

Because sort of you do all these things and then you’re just left dangling in the air sort of thing. You don’t know what they’ve done with your blood or anything. I mean they explain that it’s for research and things like that. Which you understand. But we’re just interested to know what they used it for.

Okay. So it’s not so much about personal results, it’s about the results of the research in the project?

Yeah, yeah, that’s my personal view. But I mean probably other people would like to know about the results or something, you know.

Okay.

Because, to be quite honest, my understanding is you’ve not joined it for a personal thing, you’re joining it for research more than anything. So-

Yeah, so the common good xx?

Yeah, that’s right, yeah.

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Kath is interested to know some general information about what happened after giving her sample as she’s been left a bit dangling in the air.

Age at interview 65

Gender Female

Age at diagnosis 64

You know, I think most people who, who joined it would be interested to see what happens to their blood and, and their, their tissue, what it went for and what they did with it and-.

So you would like a kind of update on what they’re doing?

Yeah, yeah.

Okay.

I mean nothing, nothing too elaborate. Just basically know, you know, what they did with the, your blood and what they did, why your tissue went there and, you know, things like that, just general things really.

Okay. Just to send sort of a letter saying-

Yeah, that, you know-

-this is where we are at this moment?

Yeah, yeah.

Okay.

Because sort of you do all these things and then you’re just left dangling in the air sort of thing. You don’t know what they’ve done with your blood or anything. I mean they explain that it’s for research and things like that. Which you understand. But we’re just interested to know what they used it for.

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Kath didn’t know why she had been chosen to participate and others hadn’t.

Age at interview 65

Gender Female

Age at diagnosis 64

I’ve sat with one or two in the waiting room and I, we were talking about it and one or two have said, Well, they didn’t ask me. Well, how did they choose you? I says, Don’t ask me. I don’t know nothing about that part of it. So-

Okay. So, so that’s interesting. Because do you think they should explain a little bit, I don’t know, on their website about why some people are chosen?

Yeah.

Why do you think, because-

Well, I’ve no idea. And I mean one or two said to me they were quite disappointed that they hadn’t been asked. Cos they would have probably joined it. And I, they said to me, Well, how do they choose? I says, I’ve no idea. I said, I just presumed that they asked everybody. And then I spoke to quite a few people who, who’ve not been even asked to join it, and one or two think to themselves, Well, why, why have you been asked and not me? And, you know, and I said, I’ve no idea how it works. I said, you know, Just no idea how it works. So I’ve no idea why they ask some and not others. So-

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Kath said when you’ve been given a diagnosis of cancer your head’s all over the place and you’re not likely to read a leaflet.

Age at interview 65

Gender Female

Age at diagnosis 64

They expect you to read the leaflet and when you go back next time to either join, say yes or no. Because, as I said a lot of people just won’t read the leaflet.

What is the problem with the leaflet?

There’s no problem with the leaflet. But the point is, you’ve got to understand that when you’ve been diagnosed with cancer, a lot of the time you can’t be, be bothering with anything else. That’s your priority, the cancer that you’ve got. And I think a lot of people that have come home with that leaflet will just shove it on the table and think, Well, I’ve got enough to be bothered with, without sitting reading that. You know what I mean?

So I think that if it was explained to you in the hospital from the beginning, people would be more interested. But people are not going to come home and say, Oh, well, I’ll read that leaflet now. Because you, you don’t, because your, your head’s all over the place when you’ve been told you’ve got cancer. And I don’t think people want to be bothered with it. And the other thing, I don’t think people understand what they’re getting into anyway. So, and I think it needs to be explained in the hospital what it is. And people will understand it and then they could, they’d be interested more in reading the leaflet then.

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Kath thinks the leaflet could be in plainer English and said it is better if you have someone to explain it to you. She thinks it puts people off signing up for the project.

Age at interview 65

Gender Female

Age at diagnosis 64

Well, I think that a lot of people will be given that leaflet and they won’t bother reading it. And they’ll just go home and put it on the table and they’ll just forget all about it. And because they’ve not read it and they don’t understand it, they just say, Well, no they wouldn’t bother. Because I sat with a lady that said, that actually said that to me, that, you know, she said that, Well, I didn’t bother. She says, Cos I couldn’t be bothered to s-, read that leaflet and I weren’t, didn’t understand it anyway. So-

So she was also invited to join, to take part?

Yeah, but she didn’t because she didn’t understand it.

Okay.

And if you read the leaflet, you know, I mean it’s not a bad leaflet but I don’t think they un-, I don’t think it’s worded very well. You know, I think it needs to be in plainer English really.

Okay. So it’s difficult, some of the wording? Okay.

Yeah. I mean not everybody is, you know, as, as intelligent as, as probably me. You know what I mean? You know, but I think word of mouth’s better than just you being given a leaflet.

Okay. So you would have preferred more explanation with people talking to you about what it’s all about?

I mean when the ladies came here to talk to me about it after I’d decided to join, they, that was very good cos they did explain it. But I think that you want explaining it right from the off. Because if you’re not explained it right from when they ask you, because you’ve got all this cancer going on and everything else, you think, Oh, you can’t be bothering with that. You know what I mean?

Yeah.

You know, so I think if it were explained to you, if they asked you about it and then they probably took your n-, and somebody explained what it was, I think a lot more people would be happier to join it. You know what I mean?

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