‘Just bodies – or partners in research?’ Dr Norma Morris and colleagues (UCL)
presenting on research with volunteer research participants in an imaging project
Our talk is called Just Bodies, and I’m very pleased to be able to start off the meeting with telling
you something about this project, based on an optical imaging study that took place at UCL, and
which was the stimulus for organising today’s meeting.
Now, the structure of our talk is going to be that I’ll hand over almost immediately to Professor
Jem Hebden who was the leader of the optical imaging part of it, and then I’ll say a few words
about the kind of interview work that we did, and we also have with us Sharon Fullerton, who
was one of the participants in the study, who’ll say something on her experience.
So next I’ll hand over to Jem, who’s going to tell us a bit more about the project.
JH
I’ll speak from here if it’s OK. A few years ago we developed a medical imaging system,
which makes images of the breast based on harmless pulses of light Our first prototype was built
by a small team of physicists and engineers, which is shown here. It required the volunteer to
lean up against a frame with the breast placed in a ring of optical fibres which relay light to and
from the breast.
About the time we were going to begin our trial of this system, Norma contacted me, told me
about her interest in patient participation and eliciting their attitudes and experiences of
participation, so we got started in a collaboration which involved Norma interviewing each of
our volunteers after each study. In fact Norma was actually present during the study. And this
proved to be very effective from the physics point of view, because the feedback that Norma
obtained enabled us to modify the system to make it more patient-friendly, and also, and very
critically, enabling us to get the optimum cooperation from our volunteers to make the data as
good it could be.
Because, as you can see, it does require a degree of participation, and quite a cooperation of the
volunteer being calm and able to experience it without too much trepidation. After scanning
about 20 patients, we developed a second prototype whose design was very strongly influenced
by the patient feedback. This system required the patient to lie on a reasonably comfortable bed,
with the breast suspended in a fluid-filled cup to which optical fibres were attached, and
throughout this second study we scanned something like 70 patients, in fact we’re still using it,
and Norma continued to obtain the views of our volunteers, and they’ve asked us to refine the
procedures, which we’re still doing to this day.
NM Thank you Jem. I’m just going to give you a quick summary of some of the things that
emerged from our talking to these volunteer participants. One comment that we heard - not very
frequently, but it did occur - was this one at the top of the slide. ‘We are just bodies, basically’.
That was from a healthy volunteer. And the idea of research participants being just bodies
appears to be endorsed by the authorities, and I’ve given you [on the slide] the example of a
definition of active partnership as being something different from being a research subject in a
study.
But significantly, there was ambiguity about these participants’ views on being a guinea pig.
These are 2 quotes from the same patient volunteer. She claims that she’s someone who’s just
willing to be a guinea pig (a body), but at another point, this same woman, in the same interview,
expresses some difficulties with the role of guinea pig. That she ‘liked being able to express her
feelings afterwards, and it’s not just like oh, I’m this guinea pig and that’s it. I’m just used and
then off I go’.
So our study aimed to probe a bit deeper, and find out more about what people did want. And to
summarise very, very briefly - they wanted to play a role that was both equal and active. The
fiirst quotation is an example of the equal thing: ‘It’s not like a medical appointment, because
you want something from me more than I want something from you’. So not dependent, but
feeling she’s actually giving something to the research.
And the second one had a quite neat expression. For her, research participation was about being
a pioneer, not a victim. An active choice, of the active role. The complementary point that I
would make to that, is that you don’t get to achieve an equal and active role as a research
participant without a lot of effort. It does depend on having the right working relationship with
the researcher, and of course researchers contribute to this as well, but don’t let us ignore or
underestimate the amount of effort that participants are putting in.
I’m not going to give you the full illustrations, but I stress that they are being active. They are
active participants. They are working hard at maintaining this relationship.
Rather than go on, I now want to ask Sharon to speak about her experience as a participant in the
study.
SF
Can everyone hear me? I’m not a public speaker, and I don’t have a very strong voice.
Is it okay? All right. So how did I come to be invited to participate? Well, in 2004 I was
diagnosed with bilateral breast cancer, but I had the very good fortune to be put in contact with
Mr. Michael Douek, maybe some of you in the room know Mr Douek, and over the next months
followed treatment, operations, and then, of course, recovery.
When, in 2007, Mr. Douek outlined the breast image procedure at UCL, he invited me to
participate in the study, and it wasn’t any problem for me to willingly agree. So I’d had nearly
three years of treatment, and amazing support through a whole team of people looking after me.
This seemed a chance in some very small way to do something to show how much I appreciated
the ongoing care that I had received.
And by then I was an office volunteer, a fundraising volunteer with the charity Breast Cancer
Care, so I was very well aware how many thousands and thousands of people in this country
every year are diagnosed, and the need for research in so many different ways.
Before being involved, I was given detailed information on the purpose of the project, and what I
would be doing, and in fact these are some of the actual pages I was given. So I was given
absolute detailed information on what was going on, eventually I even got a handwritten thank
you, but that followed on later on.
So the actual day came, the 3rd of April 2007, and I was met in the lobby of UCH. That was
really great, because I find it difficult finding the buildings in all this area between Gower Street
and Tottenham Court Road. So without exception, everyone was kind, friendly, thoughtful, and
went at great lengths to make sure that I was all right with whatever was happening. As you’ve
seen, it really… you got quite involved with what was going on.
Everyone involved I was introduced to, so I knew what a person’s role was. I found that
important, it wasn’t just sort of people floating in the background. Everyone came and we
talked: I knew who they were. And before I left there, there was a one-to-one interview, which I
thought was a really nice way of finishing the morning.
The importance of follow-up - What actually happened is that, since 2007, I received emails off
and on about the study, about the project, and it makes me feel that whatever I did on that day,
my involvement was worthwhile. And of course now it’s a pleasure to be here today, at your
research volunteers workshop, and thank you Norma for inviting me. Thank you.
NM Thank you, Sharon. We’re just leaving you with two questions which are on screen1.
We’re not going to attempt to answer them, but we think they might be addressed during the
meeting. Thank you very much.
1
Is there a role for study participants as research contributors? Do current policies sufficiently support more active
participation?