Lucy

Age at interview: 30

Brief Outline:

Lucy was a part of a longitudinal medical study. As part of involvement, she had pictures of her moles and freckles taken. At first she found this interesting, but as she got older it caused concern about whether they could be cancerous.

Background:

Lucy is in relationship and has one child. Her ethnic background is White British.

More about me...

Lucy was a part of a longitudinal medical study which her mum signed her up for when she was a newborn baby. She has limited knowledge about the study and her mum has no paperwork about it. Lucy thinks she saw the research team yearly when she was very young, and then every five years during the teenage years and young adulthood. She remembers having to take off her clothes so that the research team could take photographs of her freckles, moles, and birthmarks. At the time, Lucy felt interested in the research but also a bit uncomfortable. As a teenager, Lucy felt increasingly embarrassed and awkward about showing her body, especially because she had acne.

Lucy was aware that her moles and other marks on her skin were the focus of the study. She didn’t know exactly what the study was about and, in young adulthood, sometimes worried about whether they were looking for potential cancers. One time, she asked the researchers what they thought she should do about a large mole that kept being injured. She was disappointed at the lack of advice the researchers gave her. When she decided to get her mole removed, the doctor did not seem to know about her involvement in the study and so she doesn’t think any information was shared.

The appointments with the research team were usually organised through Lucy’s mum. She remembers the appointments being at a convenient time at her home. They were always in an evening so that she did not miss any school. When she was university, the appointments were arranged for the holidays. She does not remember filling in any questionnaires, but she believes her mum would have filled them in if there were any. Lucy has not seen the research team for about seven years. She is unsure whether this is because the study has ended or because she has failed to respond to something to keep her enrolled. Lucy does not know if the research team have access to her medical data.

Lucy’s message to parents who are placing their children into a longitudinal study is to check that their child understands that they do not have to participate. She asks researchers to make sure that information about their studies are accessible online. This is especially important to Lucy as she has not found any information about the study she was a part of online.

Interview conducted in 2019.

Lucy knows she has been in a study since she was a baby but doesn’t know the name or the aim of it.

So, this is a little bit of a tricky one because I have no idea what the name of the study that I’ve been part of what the name of it is. I’ve been in it for over 30 years, as far as I’m aware I’m still enrolled in it. It was one that I was enrolled into when I was a newborn by my mum, and she has no idea what the name of the study is, she’s got no paperwork on it. She doesn’t really know what the aims of it were [laughs].

I don’t really remember receiving a leaflet or anything about the study, maybe it was just assumed because I’d been in it for a while that I did know and that it had been communicated to me by my mum, but I don’t think it had, I think I just accepted [laugh] that it was a thing I did and that was alright. And I don’t-, I don’t know if it would be in medical notes either. I did think about-, because I spent quite a long time trying to find it online actually, this study. And to work out whether it was run by paediatrics, or dermatology, or oncology, or- or exactly where it was coming from and I couldn’t find anything. Which could be because, you know, if it’s been running for 30 years or it’s stopped a while ago, I don’t know.

Lucy has been taking part in a study for 30 years. She hopes that it might spot any health problems that are occurring.

I suppose I just assumed whatever information they were getting was helpful. And also in terms of my own personal benefit, I suppose I hoped that if they spotted something that didn’t look right, then they would tell me. And, you know, I’ve got no idea whether they actually would of or not, I assume that they would of, but it could have been written into the study that they wouldn’t kind of flag things. So, yeah, I suppose a sense of, I assume it’s useful for other people, the researchers and the aim of the project, but also helpful maybe for me as well, just getting a warning if there’s something dodgy looking.

Lucy believes cohort studies are important for collecting large amounts of data to discover patterns which will help to inform our understanding of medical issues.

Well I mean I think I do quite like taking part in research in general, and I hope and think that quite often research is about pooling together lots of experiences, you’re getting data from across a long period of time, especially in sort of childhood I suppose there’s probably a lot of data you can kind of gather that will tell you about how that will affect the person’s life chances or a group’s life chances, and how that’s going to change over time. So I think there’s a lot of point to medical research and longitudinal research where you can gather huge amounts of data and analyse it and sort of discover patterns which hopefully will help information- help understand medical issues better or develop medical treatments or practices, or isolate kind of socioeconomic or other factors that might be influential. So yeah, I suppose it’s just, yeah, I’m happy to take part in research that’s contributing to that, if it is useful.

Lucy says she feels comfortable taking part in medical studies “as long as it’s nothing particularly sensitive or intrusive or dangerous”.

Yeah, I am a big believer in, you know, decisions around healthcare and lifestyle choices and so on have to be informed by evidence, and you get evidence by doing good research. So I’m happy to be a guinea pig in that sense of it, to kind of contribute my data as long as it’s nothing particularly sensitive or intrusive or dangerous. And again in terms of kind of interventions, so the [pregnancy study name] project I mentioned, I was just using a blood pressure monitor every-, well it was sort of a couple of readings every couple of days, wasn’t an invasive experience. I found it completely fine. But if it was something that involved maybe more blood tests-, especially in pregnancy when you’re already kind of giving your blood left, right and centre, to everybody that asks [laugh] anyway, you know, I maybe wouldn’t have been so comfortable. But providing it’s a fairly painless and kind of safe, low risk contribution to research, I think it’s a good thing to do, if you can build up that wealth of knowledge to kind of make better decisions, yeah.

Lucy takes part in a study in which researchers count her moles and freckles. This made her uncomfortable when she was a teenager with acne, though she never said this to the researchers.

And feeling really self-conscious, sucking my gut in as I’m standing there in my bra and pants, with having two people taking photos and sort of documenting any marks on my body really. And I suppose because I also had acne as a sort of teenager and young adult, I remember feeling quite self-conscious generally about my skin in particular as well as all the flabby bits and saggy bits and so on [laughs]. So yeah, it was actually quite an uncomfortable experience.

Yeah. And do you remember ever communicating that to the staff or to your family or-?

No, I don’t think I did. I mean body language wise, I probably- you know, I was sucking in my gut and I probably was quite uncomfortable and there were probably sort of signs that they maybe could have picked up on. But I don’t remember ever having a conversation about it. And I don’t remember ever saying, “No”. And I don’t know if that’s because I just hadn’t- I hadn’t almost thought that I could decline, or if I just thought ‘arr no, it’s not that big a deal and it’ll be over in a few minutes’.

Lucy asked the researchers in her study for some advice about a large mole which had been damaged but didn’t feel she got a helpful answer.

I had a really big mole on my back that was right by a bra strap and I kept catching it. And this had been going on for probably a few years at that point and I’d basically accidentally ripped it off actually at one point and it was quite disgusting and sort of dangling off [laugh] and I’d stuck it back down and hoped it healed. But I became quite anxious about that being something dangerous and that I could’ve started a mutation off with the cells, and I was asking the researchers, you know, “What do you think I should do? Should I get it cut off, should I get it removed?” and I remember them being quite- well I suppose I thought it was unhelpful at the time, but they didn’t really say either way. And just kind of left it up to me about what I did with it. And yeah, I suppose that was them being neutral in their research but I remember sort of thinking-, feeling like I just wanted a bit more direction about whether it was okay or whether I should be concerned about it, and if it kept happening would something serious happen with it, mutating and sort of developing into a, into a cancerous mole.

Lucy has been in a study since birth. Her mum made the appointments with the researchers and this continued as she got older.

So they actually came to my house every time, so it was in my living room that they would come.

And I think the appointments were just arranged by my mum, so I don’t know if she got a letter or a phone call or how that was made. But it would just be in an evening, so I didn’t miss any school. Like I say, when I was at university, we coincided it for when I was down probably in the sort of summer time or around Christmas anyway. So it was quite convenient time wise and location, just being at home, was fine too.

As you got older, was your mum still always present or was there a point at which you transitioned from you being, you know, under her care to you being the adult who they were engaging with- do you remember that transition?

Not really to be honest. I remember wanting to keep my mum in the room probably out of awkwardness rather than sort of feeling vulnerable. It was probably more embarrassment, and [laugh] it felt a bit better if she was there. But I don’t remember any sort of point when, you know, questions or the paperwork or the appointments were kind of my responsibility. I’m sure she arranged the one whilst I was away at university, just for when I got back, so she would have had that communication with them and it never really transitioned over.

Lucy hoped that she and her GP would be told if the researchers found something “dodgy looking” in their study about moles and freckles, but she didn’t know if this was the case. She was disappointed when she asked for advice.

In terms of what the researchers might have found whilst looking at my skin, yes, I would have liked them to tell me if there was anything that didn’t look healthy and also to contact my GP about it. It’s tricky because some of the things like them telling me about the study and whether or not they would give me feedback if they saw a dodgy looking mole may have happened and I may have forgotten them and they didn’t seem relevant at the time, but I sort of think you need to re-consent young adults each time you see them, if it’s every few years. I guess because you don’t know at what point they are transitioning over responsibility for being in the study or if even they understand that it is a study.

I had a really big mole on my back that was right by a bra strap and I kept catching it. And this had been going on for probably a few years at that point and I’d-, I’d basically accidentally ripped it off actually at one point and it was quite disgusting and sort of dangling off [laugh] and I’d stuck it back down and hoped it healed. But I became quite anxious about that being something dangerous and that I could’ve started a mutation off with the cells, and I was asking the researchers, you know, “What do you think I should do? Should I get it cut off, should I get it removed?” and I remember them being quite-, well I suppose I thought it was unhelpful at the time, but they didn’t really say either way. And just kind of left it up to me about what I did with it. And yeah, I suppose that was them being neutral in their research but I remember sort of thinking-, feeling like I just wanted a bit more direction about whether it was okay or whether I should be concerned about it, and if it kept happening would something serious happen with it, mutating and sort of developing into a cancerous mole.

Lucy thinks it is important to tell older children who are enrolled in cohort studies that the research is voluntary. She says researchers and parents should work together to do this.

So I think as a baby-, I don’t mind that my mum enrolled me in the study but I do sort of think at some point there should have been a discussion more clearly about whether I still wanted to be in it and how I might want to change my participation in it.

Probably the main piece of advice would be to the parents actually, in that situation where it would be asking them to check that their child understands that it is a piece of research. And maybe this is more the job of the researcher but I think it should be facilitated by the parent as the child becomes more kind of able to understand different concepts about voluntary participation versus, you know, necessary medical help. Like a medical appointment that you kind of have to go to and you have to take part in the tests and have everything done for your own kind of medical benefit, versus research being something that you can stop at any point if you’re uncomfortable. So I think all of that needs to be communicated to children in ways that they understand better, and parents and researchers I guess need to work together to be able to do that.

And then just to be ready and aware that at some point you maybe need to discuss with your child again about-, about what it means to take part in the research and that they may choose not to do it, and that would be okay too if that’s their choice.

Lucy says researchers need to be flexible about the way they collect data to make it comfortable for participants and ensure participants know they can opt out if they want to.

And just make sure they understand their rights, I suppose, in relation to it. That this is not required, that it’s not something they have to submit to for their own kind of-, in the same way that if you were unwell and you needed to have medication or blood tests, you know, there’s limited choice in that situation, there’s still choice but it’s, you know, that it’s in your best interests to do it. Whereas in this situation, if there’s no direct, obvious benefit from participating, I think it needs to be really clear that they don’t have to keep doing it if they don’t want to, or maybe there are ways that you can kind of be more flexible about how you approach things, to make it more comfortable for them. So, in my experience, maybe, maybe if somebody had said to me, “Would you just prefer two female researchers?”, I maybe would have said, “Yes”, as a teenager, I might not of, I might of just been too embarrassed and been like, “No, no, it’s fine”. But giving options and choices and making sure they understand that this is not required from them, yeah.