Today’s research could be tomorrow’s cure

Last year, around 2,300 people took part in 150 different trials in a range of fields at Basildon University Hospital, including rheumatology, haematology, gastroenterology, neurology, respiratory medicine and pain.

The research and development (R&D) team want to spread the word about the benefits of research itself, and how taking part in studies can be a bonus for participants. To mark International Clinical trials day they are hosting a research open afternoon on Monday 21 May.

The event will feature talks and information about research and innovation from the trust and partners, including the MSB Innovation Fellowship, UCL Partners, Health Enterprise East and Anglia Ruskin clinical trials unit.

All are welcome to come to the open afternoon, from 12 noon – 2pm in the social area of the education centre.

Case study – Research trial enhances care, says leukaemia patient

A retired teacher who completed a course of chemotherapy has praised the care she received from haematology and research staff at Basildon University Hospital.

Helen Wood, who has chronic lymphocytic leukaemia (CLL), had the last of six rounds of chemotherapy at the end of 2017. She is continuing to take tablets as part of a clinical research trial called FLAIR, which aims to see if treatments containing a drug called ibrutinib work better than standard treatments for CLL.

Helen said: “I was diagnosed in March 2015, when I had a tooth abscess and enlarged lymph glands. I had not been feeling unwell so it was a shock.

“I saw a haematologist who said CLL is one of the ‘best’ cancers to have, if you have to get cancer and that I would need radiotherapy and chemotherapy.”

Helen, who lives in Chelmsford, started chemotherapy in July 2017 at Broomfield Hospital where she was told about the FLAIR trial at Basildon Hospital. Even though it meant travelling to Basildon, she wanted to be part of the research, and is pleased with the decision she made.

She said: “It’s a bit further to travel but we learned to ask for appointment times to work round the traffic. I liked idea of being looked after by specialist haematology team. The care has been brilliant; it is expert and consistent and seeing the same people builds up trust.

“As well as a having a named haematology nurse and an emergency number, because I am on a trial I also have a research nurse.”

Angelo Ramos, Helen’s research nurse, said: “Patients on trials can call us any time if they feel unwell or have any concerns. Our research patients tell us that they find the additional attention beneficial, with more monitoring and more time to ask questions about things they might think too trivial to ask a doctor.

“Many of them say they want to make things better for other people. They are doing this voluntarily so we want them to have a good experience.”

There are currently four CLL patients at Basildon Hospital on the FLAIR research trial. Participants need to be under the age of 75 and fit enough to take part. Ibrutinib has been approved by the Medicines and Healthcare Products Regulatory Agency (MHRA).

About research at BTUH

Most people who take part in research trials at Basildon Hospital say it was a positive experience.

The National Institute for Health Research (NIHR) carries out a patient experience survey to find ways to try and improve how clinical trials are delivered to patients and to compare the figures year-on-year. In the 2017/8 survey, 90% of our patients agreed that taking part in research was a good experience for them, and 85% said they would be happy to take part in further studies.

If a clinician has an idea for a research project the R&D team will assess and scrutinise the proposal, and gain approval from the appropriate national organisations regarding sponsorship, funding, ethics and regulations. For example, if the trial will involve a drug, it must meet with Modern Humanities Research Association (MHRA) approval. Research done on drugs at the trust is at the stage when they have been approved as safe, but further research is needed to test how effective they are.

Depending on how many participants are needed, the trust may approach other hospitals to recruit the required number. Each study has a chief investigator responsible for the research, who leads a team of nurses on local sites.

Nearly all studies at Basildon Hospital are funded by the National Institute of Health Research but some are funded by charities.

Why take part in clinical trials?

Ashley Solieri, associate director, research and development, says: ‘There is increasing evidence to support the fact that patients attending a research active hospital have better outcomes – our aim is to be able to offer patients attending Basildon Hospital the opportunity to participate in a research study.’

Jean Bryne, senior clinical trials practitioner, says: “It’s understandable that people have a lot of questions about the possible benefits and effects of taking part in research trials, and we make provide them with all the information available.

“One advantage is that patients get additional quality time with nurses to ask questions and discuss issues about their condition they might think too trivial to talk to doctors about. They find that really valuable.

“And many people say they want to make things better for others who have the same condition as them. One example is the development in treatment of HIV. Years ago a diagnosis was a death sentence but so many advances have been made.”

Raiji Koothoor is research approval coordinator. She adds: “Taking part in trials often gives patients access to medicines and treatments they would not normally get that may give a chance of a longer life.”

Mark Vertue, research nurse, says: “Some people with liver conditions can’t produce enough platelets - an element of blood that helps it clot. So if they have an operation they will need to have a blood transfusion - this will introduce antibodies into your system which can cause problems.

“We took part in a global trial to test a tablet to increase platelets for these patients.

“By doing research now we are creating best practice for the future.”

I’d like to help with research trials - how can I get involved?

If you are a patient, you can ask your consultant or other clinical staff involved in your care if there are any research studies going on relevant to you.

You don’t have to be a patient. We also need healthy ‘controls’ for trials.

If you work for the trust and would like to get involved with research, please speak to the R&D team. Helping with trials does not necessarily mean extra work; it may give an opportunity to pass benefits on to your patient and can boost your career development.

The R&D team want to appoint a team of patient research ambassadors, who have taken part in research studies and are willing to promote the research from a participant’s point of view.

If you are interested in supporting research, please contact the R&D team on 01268 394673 or email clinicalresearch@btuh.nhs.uk