Cohort Studies

I don’t think there was anything I would say to improve practice but what I would say is thank you because they’ve always dealt with me with the utmost civility and friendliness and, and information has been good and given and if they continue in that way as they have with me then it can only be, you know, a contributing factor to the success of the research. No, I’m very positive about the whole experience in both cases.

Keep the good work going, yeah. You know, I like the way that I’ve been respected, and I like the way that I’ve been handled and spoken to.

But I think the medical profession, the way they’ve been with me, has been fantastic, and if they can be like that with everyone then they’ve got a great chance in the future of being successful.

Well, I think you’re doing, you know, really brilliant job and I’m sure lots and lots of people would benefit from it and we all appreciate your research and endeavours and the outcome of your research, yeah. I think it’s, you know, as I say, a jolly good thing and I can’t see anybody’s who’s open minded, not volunteering to do it. It’s like, you know, volunteering to give blood etc. It’s just one of these things you feel you want to do.

Yes, yes. I mean it’s-. Whenever I go for my six monthly- not check-up but research, if there’s anything that’s cropped up or any problems that have cropped up, issues things I might think I don’t understand, I make sure they’re asked at the session, at the research session. And I haven’t said this before, but it takes the best part of a day. It’s probably, I don’t know, four or five hours. And it also helps pass the time if one can have a discussion about my own PMA or just, you know, MND in general. And the doctors are very enthusiastic, and I have asked them on occasion why they carry on working on a disease which is incurable and debilitating. And it seems to be a, it seems to me to be quite a negative- not negative, that’s the wrong word but soul-destroying illness to be involved with, because in effect they can’t do anything. All they can do is diagnose you and even that can take six months, and that’s partly why the [biomarking] study is hopefully going to provide some quicker means of diagnosing MND. Because the quicker the disease is diagnosed, the quicker people can be put onto riluzole, which is the only drug can help people with MND.

And do you know the results of these tests?

Yes with-, without explanation though…

Okay.

…which I would say would, they should do. But they’re, “Everything is normal”. ‘Yeah, okay, normal for them but which norm-?’ They had graphs as well, so I went back myself, researched it, looked up and what it means, my subcutaneous fat, there’s my visceral fat plus my bone density, yeah.

The feedback is the bigger thing that, as I say, again and maybe more written stuff I understand will be hard for the admin to do too much paperwork but just copy some of the end results maybe in a few lines in a summary, drop it back to the parents, drop it back.

Yeah if you’re volunteering yourself and your information for a study, you know, it’s only, it’s only sort of, well it’s nice to be able to be informed about it. It’s polite, isn’t it, to give some feedback other than just results on your own physical test.

Just little updates not in-depth just a few lines, a few pages of report maybe or a page of a report, an update, a few bullet points. It’s quite easy to produce a report in an easier understanding format that anybody can understand.

Yeah, you get this envelope and you open it and you start reading, you think, ‘Oh, this going to be interesting.’ Then you think, ‘Oh, they’re not telling me very much.’

Okay.

And I get that, and I wonder what they’re getting, like, I just sort of said, I wonder what they’re getting out of it because they’re not telling us very much.

And then last year I did participate in a focus group. It was about this time last year which was a group and there-, they were really discussing almost the next stage and they were planning again, whether the funding’s there to do things like MRI scans on people and how we would react to that because I think a lot of people, things that are more invasive, I think some people would be quite reluctant to participate. So that was quite interesting on how we felt about it and how they could actually, I suppose sell it for want of a better word to us.

And what were your feelings about it?

Well I, you know, I, I’m, actually I was-, interestingly a lot of us felt very nervous about the thought of having an MRI scan just for, for research purposes. It’s one thing having something like that if you need it but they were very reassuring and I think quite a few of us who might have been reluctant but came away from that, I mean it was just a couple of hours and the lunch I think, just, you know, came away feeling quite confident and I think we, you know, would participate.

My message would be that stay connected to average people, you know, you, you can learn a lot from them or they can have a, a big input on your studies. And especially, you know, living healthy and like the problem I just told you about seem small but, you know, about litter in the street but if you look at it, it has an impact on our children. So if you stay connected with average people, find out about, you know, different issues or problems that they’re facing, it can direct you towards your research or find a solution to various problems that communities are facing that has an impact on their health and emotional wellbeing.

I think some of the people who do do the research should be coming from the family categories as well.

In what way?

In like a lot of people are youngster that are sitting there doing the research, but they don’t know what it actually happening. It would be nice to have a mixture of all abilities. Have some mothers on the research team as well; have some fathers; have some young people there as well. Does that make sense? Rather than making a research team out of just professionals/students or you are good in that? Develop the skills in them and they will be more empathy, understanding the research as well, understanding the person, so they will realise why they come out rather than just say, ‘Oh collecting data, like ten, twenty, forty, fifty people, that’s the answer, that’s it.’

So do you think there should be people from the community involved in…

Yes.

…actually running the research?

As well, yeah.

But again, they should be upskilled. I’m not saying just pick anybody up [laughs]. Train them. Give them the training to understand [laughs].

Okay so every survey should end with, "What question should we have asked but didn’t?" And every question should have, you know, confidence in the answer or even just a like and a dislike button because the dislike button you could then when you receive it, if they’ve left their email and it’s not totally confidential, you could go back to them and say, “Here’s the question you disliked, what did you dislike about it?” “Well, the question wasn’t clear, and the options didn’t match anything in my lifestyle so my confidence in it was zero, so I just thought you ought to know”.

But as a parent governor you’re presented with various like, for example, like memos or like maybe leaflets that they’ll wanna send to other parents and they ask us to go over it. “Is the language understandable?” you know, “Is it friendly, average people can read it?” or, “What do you think of the questions? Are they too invasive? Would people be pushed off by it?” So we usually as parent governors give them feedback about, you know, yes the terminology is too medical depending on who like, I remember one of the PhD students she wrote for her PhD she wrote like a like I think it’s a healthy, healthy living or life, changes for life or something like one of those.

Yeah, the questionnaire that she did was too medical so we said to her like average people won’t, you know, people that speak English as a second language they won’t understand the terminology so simplify it a bit or for this word instead of using this word this is another word that you can use.

Asking it in simple terms.

Exactly

It’s in simple terms because different people are different levels in their education and understanding.

Exactly.

So keeping it simple you’ll get most people understanding what you’re trying to say.

The main point is to explain that benefits I think to both of them, to them and to-, to the research that they’ll be contributing to. Or to the programme, the project that they’ll be contributing to but also benefits to them. I think- I think that’s the only way you can get people to participate. I think you can’t force people, you just have to raise their interest level, so I think you- you can pick out issues that would be informative to them from the- from the tests that you’re doing from the project that you’re doing and say, “Would you like this to happen, would you like to take part in this because-?” You know, fixate on something that maybe would interest them rather than turn them off. So maybe a lot of information is good to certain people but small snippets of information is good for others, you know, sound bites. I think that’s the only way you can get people interested is by just giving them more information.

Oh I’d say, I’d actually say keep up the good work and as I say I just hope with all the sort of economic uncertainty that they’re able to get funding to continue because I think, you know, with more of us living longer I think this stage of our lives the research is almost more important than some of the earlier things.

And do you think that sort of, you know, putting money into a long term cohorts study has benefits over just funding a short term study?

I think so because I think there’s a lot of preventative work that can be done. I mean they-, with this study thinking particularly about the, the sort of dementia aspect, I mean they will be able to look at us from the age of 50 and, you know, when they see who has dementia, who gets dementia, Alzheimer’s; there may be trends. There may be things that they can spot that about when we were 50, you know, maybe something completely, at the moment seem completely irrelevant to, you know, the increase of dementia but they may be able to see trends and see, you know, certain things that, you know, conditions at 50 were going to affect the likelihood of us getting Alzheimer’s and dementia and be able to correct, be able to deal with this for subsequent generations.