In February Cambridge University Hospitals are running spotlight features on the staff involved in research on the campus. Eleanor Mawbey-Adamson from the Cambridge NIHR BioResource was one of the lucky people selected to take part to find out what kind of research work she undertakes.
Eleanor explains the importance of the BioResource and how easy it is to sign up and take part in research.
Ellie, tell us about your role...
I receive enquiries and applications from a wide range of research teams who are interested in recruiting to their studies through the Cambridge BioResource. I talk with them in depth about how we can support their study and I guide them through the application process. I review their ethical approvals, ensuring that everything is in place to begin the study, and oversee study progress until completion. I also manage the day-to-day running of the Cambridge BioResource team, ensuring that we are delivering on both volunteer enrolment to the panel and recruitment to our portfolio of research studies.
How long have you worked here?
I’ve been here since May 2015. I was previously a Tissue Coordinator at Oxford University where I oversaw the collection of tissue samples for research studies. I came to Cambridge to develop my career in an environment with a great reputation for research.
Why were you interested working for the Cambridge BioResource?
It can often be very difficult for studies to recruit people to take part in their research, particularly when they want to target those who fit a very specific criteria. The BioResource is a fantastic platform to facilitate recruitment to these studies in a relatively short time period, which could ultimately lead to discoveries that may not have otherwise been made. This basic level research is vital if we are to develop new treatments for conditions that are often debilitating and affect many lives. The BioResource team are passionate about the experience that both our volunteers and researcher receive. We really believe that we are making a difference to the treatment options and medical care that will be available in the future.
Why is your role so important?
It’s really important that we build a good relationship with our volunteers and they have a great experience with us so that they will want to continue to take part. It’s also really important that we support the needs of the researchers which can change quickly based on their results. It is a difficult balance sometimes but my role is to make sure that the team are working well to maintain delivery in both areas.
There is the Cambridge BioResource and the national BioResource. What is the difference?
The BioResource was established in Cambridge as a small research project. Due to its success the National Institute of Health Research (NIHR) decided to roll it out across England with eight BioResources currently established. The Cambridge BioResource is the lead site with the national coordinating centre also being based in Cambridge. This national BioResource oversees the local centres working together to recruit to studies that cannot be completed by any one BioResource. It also offers the opportunity for members of the public to volunteer even if they don’t live locally to a BioResource.
How do you become a volunteer of the Cambridge BioResource?
We currently have 15,500 volunteers on our panel but are always keen to enrol new people. We regularly receive enquiries from members of the public who are interested in joining. We provide potential volunteers with our information leaflet to explain a bit more about what we do and offer appointments to sign up at Addenbrooke’s Hospital. Joining is simple, we just require volunteers to sign a consent form, fill in a short health and lifestyle questionnaire and donate a small blood or saliva sample.
When the volunteer signs up, what happens next?
Volunteers who join our panel agree to be contacted about current research studies that they may be interested in taking part in. There is no obligation to take part in any of the studies and we will only invite volunteers to a maximum of four studies per year.
All samples are labelled with a unique identifier and all personal information removed. We go on to extract DNA from the samples and this is then screened for the specific gene that each research study is interested in. This is called genotyping. We combine this with the information that volunteers give us in their questionnaire to match volunteers to studies. Volunteers who meet the study requirements will be sent an invitation with more information about the study in question and the level of commitment involved. They are then free to choose whether or not they would like to take part. If the volunteer would like to participate a member of the team will contact them to further discuss the study and arrange any necessary appointments.
Have you received any volunteer feedback about taking part in the BioResource?
We recently sent out a questionnaire to a random selection of our volunteers. We got some really positive feedback. Volunteers really like what we’re doing and their experience of taking part in the research is very positive. We are always happy to receive feedback. We love to hear about what we are doing well and what we could do to improve.
Do people tell you why they want to take part in research?
There are lots of reasons why individuals want to take part. Sometimes people have a research or medical background and are interested in the science. Others are personally affected by certain conditions and want to contribute to researching potential treatments. Some people just think it’s a really good thing to do. They can see the future benefits of it and are really generous to give their time and support us.
What kind of things do people have to do to take part in research?
There are lots of different types of studies we have supported in the past with varying levels of volunteer commitment. Quite a few involve giving a single blood sample or giving samples on more than one occasion over a certain time period. Some have required an MRI scan, having a vaccination, completing online questionnaires or just taking height and weight measurements.
People can decide what they want to participate in.
A large proportion of volunteers are regular blood donors so we work really hard to fit in study appointments around their donation schedule so that they don’t need to delay their donations.
Why should people take part in research?
It doesn’t take much time to volunteer but the future benefits for us and the next generation are potentially huge. Cambridge is a fantastic university and we are working with one of the best hospitals in the world to move forward with research. Our prolific reputation is due to successfully recruiting volunteers to a wide range of research projects. The more people who want to get involved, the more we can achieve together.
Should people be nervous about taking part in research?
Not at all. The vast majority of research studies at the Cambridge BioResource only require a small sample of blood, about five tea-spoons, and filling out a short questionnaire. We always talk through what’s involved, we’re very up front and volunteers can decide on a study by study basis if they want to take part.
We never pass on personal details; samples are provided to researchers anonymously and never given to third parties without the volunteer’s consent. We have a dedicated group of research nurses who are qualified and are very friendly and approachable. They will take the time to talk through each study with volunteers. There is always an opportunity to ask questions and volunteers can withdraw their involvement at any time. Our nurses have even won the 2015 Nursing Times Award in Clinical Research for all the work they do with the BioResource volunteers.
Can only healthy volunteers take part?
No. We have people from all walks of life on the panel so that we can facilitate a wide range of research studies. We even have studies that would specifically like to recruit people with certain conditions, such as Type 1 Diabetes.
If people want to get involved in research, who should they contact?
Take a look at our website for more information or call us on 01223 769215.
What do you like to do in your spare time?
I love being outdoors and am a country girl at heart. I particularly like to spend weekends walking along the North Norfolk coast with my husband, which is where we both grew up. I have enjoyed sailing for many years and have recently started to go canoeing. I love to have weekends away in the tent exploring the countryside but I also enjoy going further afield (although in a little more luxury than a tent!). Our most recent trip was to Cologne where we spent time looking round the fantastic Christmas markets.
What would be a wish come true?
I would like to start a family at some point in the future. I think that would be such a lovely thing to have.