Biobanking
Messages to professionals
We invited people to give a message to the professionals involved in biobanking and research. They used this opportunity to make recommendations about how their experiences could have been improved, and to highlight aspects that were positive and negative. These especially concerned their relationships with staff, the information they were given and getting feedback after the research. (See also ‘Communication and relationship with staff’, ‘Information and questions’ and ‘Getting feedback’).
Generally people wanted to thank the staff and to praise them and their work. They also wanted to encourage them to keep doing the research they were doing and were impressed with those who researched “frustrating” conditions such as Motor Neurone Disease.
Ian wanted to encourage the staff to keep researching. The doctors carrying out the research have been fantastic.
Ian wanted to encourage the staff to keep researching. The doctors carrying out the research have been fantastic.
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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, and above all else, the truth that comes from them. The, you know, the reality of what’s ahead of you. Yes, it’s a horrible thing. MND is horrible, and, you know, we can’t hide that. 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.
Roland is amazed that doctors want to research conditions such as Motor Neurone Disease. He thought it must be 'frustrating for them'.
Roland is amazed that doctors want to research conditions such as Motor Neurone Disease. He thought it must be 'frustrating for them'.
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Well, as far as the neurologists, the MND doctors that I’ve met, this isn’t necessarily answering your question, but I’ve found them all to be very eloquent, very helpful, very nice people. As I said before it’s, I find it amazing that they can carry on doing what they do, helping people with MND, even when there is so little they can do, and it must be so frustrating for them. I know it’s probably more frustrating for the patients themselves, but we didn’t have any choice as to whether we’re going to have our condition or not, and these doctors have decided they want to help people with MND. And long may they continue to do so.
It was appreciated when staff made the effort to establish friendly relationships or partnerships with participants, especially when they were taking part frequently or in studies which required several visits. Most people said they experienced positive interactions with staff with one saying she felt like a “valued colleague”. Research nurses and midwives often build particularly close rapport with people.
All the staff have been really helpful and concerned. She felt like she was working with them rather than for them.
All the staff have been really helpful and concerned. She felt like she was working with them rather than for them.
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I can honestly say all the people I’ve met through all the studies that I’ve done have been particularly helpful. They appear concerned about me, they recognise me now because I’ve done half a dozen studies, and it’s nice to walk in and they say, “Hello Chris, how are you? Nice to see you back” and they usually smile at that because they think, you know, “Here she is again!” But no I actually don’t have any criticism of any of the people that I’ve actually worked with. And I do think of it as working with them, if that makes sense, because they’re doing their job. I just happen to be a volunteer that comes along and hopefully helps them on their way.
Nurses pop in to say hello to Elaine when she goes to donate. She thinks they make that effort because they appreciate her participation.
Nurses pop in to say hello to Elaine when she goes to donate. She thinks they make that effort because they appreciate her participation.
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Well, I do. I mean I really like the staff that I’ve met up with. And even, because I’ve gone to quite a few of them, sometimes you will be with a different member of staff and one of the other nurses will pop in and say, “Oh, I knew you were coming in today. I’ve just come round to say hello.” And it’s lovely, you know, that they make that effort, because I’m sure they are grateful that you go in, because they need people there to do the research on. But they’ve all been lovely, all been really nice.
For the most part, people’s experiences of biobanking were positive. However, one person, David, thought the doctors could have been friendlier. He explains how their attitude could stop people from asking important questions about participating in biobanking.
David thought the nurses were friendly, but the doctors seemed to "keep people at arm's length".
David thought the nurses were friendly, but the doctors seemed to "keep people at arm's length".
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In terms of the message, or the way that staff talk, I think there’s a tendency amongst the consultants, and particularly the consultants and the doctors, to try and keep you at arm’s length. You try to get to know them better and talk to them on first name terms, and they always reply “Mr Clark”, and you can see them pushing you away, trying to keep you at a distance.
And I think that’s a mistake. I think that they would get a lot more out of people, they’d be a lot better off if they spoke to people and tried to make it more friendly, more personal. The nurses tend not to be like. Once you get to know them, they’re much more outgoing, much friendlier, but as soon as you go in to see the doctors, I think they’re trained to keep you at arm’s length, which is a shame, I think. Because that sort of stops that conversation about, “Well, why are you doing this trial?” you know, “What are the benefits?” and things like that.
And, you know, if you make a remark they don’t respond, and you think, “Well, what are they trying to keep from me?” I think if they were more open, and tried to explain things a little bit more, and that would help a lot, I think.
Gill pointed out how important it is for staff taking people’s consent to be able to explain what the project is about.
Gill contrasts her experiences of two research projects. One member of staff could not answer her questions, but the other was much more knowledgeable.
Gill contrasts her experiences of two research projects. One member of staff could not answer her questions, but the other was much more knowledgeable.
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I’d forgotten about this one, but I was asked to provide an extra blood sample. This was during the same period of time, so during the course of my breast cancer surgery. And it was providing a sample for what I presume was a local study for blood marker assays. I don’t know what they are [laughs]. And I just got a leaflet and was asked if I would give a little extra blood, during a normal blood test a little extra blood which would then be used for doing research around cancer. And as I say I can’t remember what assays mean, because I’ve only just found this leaflet again. I’d forgotten all about the fact that I had done that.
And in fact the nurse who took the blood didn’t know anything about it. So I did ask her at the time and she didn’t really know any more about it than that, than the information I’d got. So, yes, it - yes, it’s not, it’s not hugely helpful, this leaflet. [laughs] Well, it’s two sides of A4, which really doesn’t say a great deal. I mean the purpose of the study is that small two paragraphs there, very, very small.
I think it would have been helpful for her to have known something about it. She, she just sort of, “Oh, yes, I think I know what you’re talking about” sort of thing. But, yes, I think so. And had it been at a different time I would probably have asked for more information on this one.
Because I think you talked last time about problems with recruitment often stemming from a lack of involvement of –
Yes, yes.
-- those staff at the front line.
I think that’s true. I mean, it doesn’t inspire confidence if the staff involved don’t know what it is they’re taking the sample for, and can’t tell you a little bit more about it. I mean it doesn’t, it isn’t a lot of information that they would have to carry, I think, but at least to know what the basics are about this. And then, you know, if there are more detailed things you want to know, to be able to point you in the right direction for somebody to help I think is really important. Because it, you know, gives you confidence that somebody knows what they’re doing and it’s going to the right place.
And with the tissue bank, was the person taking consent informed about the study?
Yes, yes, she was much more involved. I think she probably did this as her full-time career, [laughs] full-time job. She was actually sitting and talking to patients. As part of your clinical appointment there was a sort of ten minutes with her to, if you wanted to do that, to talk through the donation of surplus tissue. So that seemed much more structured, and well set up, and I assume that’s been going for some years.
People made some recommendations that they felt could help improve their experience, including the importance of providing feedback about study results if possible. This was both as a matter of courtesy and as a way of encouraging people to take part another time, though it was recognised that this might not always be practical (see ‘Getting Feedback’).
After giving their time and possibly having invasive procedures for research, Jean feels participants should be given feedback. People are sensible enough to know that research findings are not always positive.
After giving their time and possibly having invasive procedures for research, Jean feels participants should be given feedback. People are sensible enough to know that research findings are not always positive.
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I think generally, I mean in the sort of bits and pieces of research that I’ve done, participated in, everybody has been very welcoming and accommodating and, you know they sort of go out of their way to make you feel, I suppose, comfortable. If I would have had a point to make, and I think it is on the feedback, because it certainly happened to me. It was a, I just took part in a short sort of survey study and somebody was doing it for their PhD, and yes, they would communicate by e-mail, and yes, they would sort of say what the results were - and I never heard anything. And I was fortunate, I actually was able to sort of find out indirectly what the results were. But I do think it is a courtesy, and I think if you’re asking people to give of their time, effort and in some cases sort of body samples and invasive procedures they have to undergo, then I think all they’re asking for in return is a little bit of feedback as to what the outcome was. And as I say, I don’t think any of us really worry about - we’d love every study we took part in to have a positive result - but I think most people are very sensible, and they realise that, you know, a negative study actually can be as important as, as a positive one. But it would be nice to know.
Finding out how your contribution has helped research could encourage future participation.
Finding out how your contribution has helped research could encourage future participation.
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I suppose that on that issue we touched on earlier, where we were talking about keeping people informed about what happens after your part of the research, give them some sense of the big picture. Because that’s partly why you got involved in the first place, I feel, and it could well encourage more participation, my feeling is.
A further recommendation concerned the information they had received to help them decide whether or not to take part. In addition to receiving clear written information, people felt it was also important to have someone to discuss the research with and to learn about studies in which their samples have been used.
It is important to be able to have a discussion with staff who understand how the samples may be used, and for researchers to give feedback on all the studies in which your sample is used.
It is important to be able to have a discussion with staff who understand how the samples may be used, and for researchers to give feedback on all the studies in which your sample is used.
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I think the consent procedures are very important. It’s good to have clear information and plenty of links to people who you might be able to ask questions of if you have questions. And certainly with the experiences of the first two tissue samples through, related to my breast cancer, the fact that somebody, you can talk to somebody who knows about the study, even if it’s, you know, fairly, fairly general level, is really important and gives you some sort of trust that this is something that they know, they know about. I think that’s important.
Messages. I think the main message for me is that with big studies, certainly - well, with all studies - it’s really good to be involved, to be able to follow and track what’s happening, and to perhaps get access to the sorts of things that might be happening. I don’t expect anything that is pertinent to my particular sample. But to feel and to get, to get information about the types of studies, what perhaps has been successful, what has been learned from use of Biobank, in this case, or tissue banks is very, very good. And I think that researchers should include that element within their plans to disseminate to the public.
Jean (a former doctor) thinks that staff should make no assumptions about people's knowledge, and ensure they explain everything clearly to everyone.
Jean (a former doctor) thinks that staff should make no assumptions about people's knowledge, and ensure they explain everything clearly to everyone.
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Anything about the information that you were given that you feel could have been improved, or that you thought was particularly good or? Was it easy to understand?
Well, I thought so. I’m probably not the best person to say that, though, because, you know, I have got an advantage in having a medical background. But I think in all honesty that they explained things very well, and I would imagine that for everybody who takes part they feel they’ve got a very good understanding, either from the documentation that they received, or alternatively just talking to the researchers, because they do go through it, you know, very carefully, and I think in fairly easy language. But that’s the one thing that I’m probably not the best placed person to be absolutely certain about, because I’ve got that sort of medical knowledge, that you sort of take a bit of jargon for granted because you know it, and maybe things may, if they slip through the net it may slip past me too. But I would doubt it. I think that the information I got would have been self-explanatory to everybody and was very clear and precise.
And actually you’d mentioned before that sometimes you feel disadvantaged as a doctor dealing with other health professionals. And actually this sounds like an instance where that wasn’t the case, that they didn’t assume knowledge that you didn’t have.
No, I don’t think it did, basically because I think in a research project that it’s of paramount importance, that you’re dealing with volunteers, basically, and I think it’s very important that you must be sure that whoever it is happy that they’ve got all the information that they need. And I think the way to treat anybody, from whatever background they are, is to treat everybody the same. And I think that’s true in clinical medicine as well. Don’t make assumptions. And I think it’s, you know, of paramount importance if you’re dealing with a volunteer in research. And therefore it’s much easier for the researchers to go through the same talk initially with first-time study participants, irrespective of their background, and I think that’s what they tend to do.
There were differing views about who should help possible volunteers decide whether to take part. Some people felt they wanted to make their own independent decision, while some wanted to discuss it with someone else, perhaps their GP or a family member. However, Karen felt sometimes doctors are too reluctant to give people advice.
Karen would prefer doctors to use their expertise to guide her decisions, rather than just giving information and leaving it up to her.
Karen would prefer doctors to use their expertise to guide her decisions, rather than just giving information and leaving it up to her.
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The other thing that I found quite hard throughout, and this wasn’t just at the cancer centre but other places, is when you’re asked to make your own decisions. I do my job, I consider myself the expert at my job, and the doctors are doing their jobs, and they should be the experts at their jobs. And if they want to come to me for my professional advice, I’ll give them my professional advice, and I’d like it to work the other way on, but I feel that they just give you the information and tell you what, what your choices are and you really have to make a decision from there. And I think I found that really hard, knowing that you’ve made the right decision.
David had similar feelings about one occasion when he made a decision not to take part in a study and the doctor replied that she would have said exactly the same if it were her. David thought, “Well, why are you asking people to join this trial if you don’t believe in it?”
In general, the people we spoke to were glad they had taken part, and many wanted to thank the researchers for providing them with the experience. Julie said, “Thank you for letting me take part. Thank you for treating me as a valued colleague in the process and good luck with future studies”.
Last reviewed February 2016.
Last reviewed February 2016.
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