Research and Innovation
Autumn 2017
Welcome to our new Patient Research Ambassador (PRA)
Can you tell me a bit about yourself? “I My name What type of study are you taking part in? is John Smith, (yes, really!), and I am 69 years old living not far from Stoke Mandeville hospital. I retired two years ago from an active Vice “ President role for an international company involving significant travel. How did you find out about it? “I Why did you decide to take part? Since retiring I have taken up a number of new activities, including “ competing in Triathlons, oil painting, and working for a rugby based charity
to help change the lives of young people in the community. I have also gone back to college to study various subjects, such as The World’s Great Religions and International Politics of the Middle East. However, I wanted to find a way to put more back into my local community. I was then approached to become a Patient Research Ambassador. Having read the Role Outline, I really felt that this was something that I would enjoy. I have gone up a very steep learning curve since starting a few weeks ago. I
What do you have to do? visited the research teams in Spinal, Cardiology, Cancer Care and Haematology as well as Gastroenterology “I and Hepatology. I am simply amazed at how much research is being conducted, and how many studies are What would you say are the benefits to you? being carried out. I also learnt that the Buckinghamshire Healthcare NHS Trust is amongst the leading Trusts “I’m in research and say study in theabout UK. taking part in research? What would you to recruitment anyone thinking “.”
I am looking forward to making a real contribution to the work of these teams. To find out more about the role of the PRA see the NIHR website https://www.nihr.ac.uk/patients-andpublic/how-to-join-in/patient-research-ambassadors/
Thames Valley Health Research Award Winners Star Research Nurse: Judith Abrams, Ophthalmology Outstanding Research Practitioner Award: Emma Reel, Obstetrics & Gynaecology Exceptional Performance in Recruitment to a Commercial Study: Wycombe Stroke Research Team Research Champion: Julie Tebbutt, Obs & Gynae
What is GCP? Good Clinical Practice (GCP) is research specific training programme that all research staff in the EU must undertake and refresh on a regular basis. It provides a set of rules and legally binding regulations covering all aspects of research activity, study processes and data management set out in law to protect and ensure the safety of participants. For further information about research opportunities at Bucks Healthcare NHS Trust please contact the Research and Innovation Department at Stoke Mandeville hospital on 01296 316065 or see the website at www.buckshealthcare.nhs.uk/research
Why is research important?
Health and social care research can help us to: Identify people at risk of getting ill and help prevent illness. Provide the best advice and treatments for people. Share knowledge and understanding about different conditions.
Study Snippets
We do not know the best approach to follow-up for patients who have had surgery for early stage breast cancer. Current methods can be stressful for patients, costly for the health services and timeconsuming for both. It is not clear how often women aged 50 years or over at diagnosis of breast cancer, need mammograms if they are supported and monitored in other ways. MAMMO-50 is a randomised controlled trial to investigate the most effective and safe way of monitoring women aged 50 or over who have had breast cancer surgery within the last 3 years. The results will inform national guidelines about the best way to follow-up women who have had surgery for breast cancer For more information contact Manisha.Joshi@buckshealthcare.nhs.uk
Find out what people think about services. Assess how effective services are. Improve the environment, health and well being of a local population. See website: www.nihr.ac.uk/thamesvalley For details of studies seeking volunteers visit www.ukctg.nihr.ac.uk
We are now recruiting patients for the UK IBD BioResource which is looking for 25,000 patients across the UK. It aims to turn recent scientific and genetic advances into improved understanding and better treatment of IBD and is open to all patients with Crohn’s disease or ulcerative colitis. What’s involved for patients: • Read the information sheet, understand what’s involved and sign a consent form • Fill in a questionnaire about health and lifestyle • Donate an additional sample with normal clinic bloods • Samples are sent for genetic analysis • Agreement to be contacted about future IBD research which may be of interest It’s simple and quick: if you’d be happy to help contact us on 01494 426588 or ruth.penn@buckshealthcare.nhs.uk
We are looking for participants for a national gynaecology study called GaPP2. This trial is studying women with chronic (long term) pelvic pain (CPP) who have had laparoscopy in the last 3 years that has shown no obvious cause for the pain. If you are between the ages of 18-50 and have had CPP for longer than 3 months you may eligible to take part. A drug called gabapentin is commonly used for other chronic or long term pain conditions but there is no proof that it helps women with CPP. A small study has already taken place comparing gabapentin against a placebo (a dummy drug) and this showed it might help but we need more evidence to prove that it works. For participants in GaPP2 we will give half the women gabapentin and half the placebo for 16 weeks. Recruits will not know whether they are taking gabapentin or the placebo until the end of the study. Participants are asked to keep a medication diary and record pain scores. We hope that this will tell us whether it is helpful for women with CPP. If you are interested in this study please phone Julie Tebbutt research nurse on 01296 418160 or email julie.tebbutt@buckshealthcare.nhs.uk http://www.ed.ac.uk/centre-reproductivehealth/exppect-pelvic-pain/research/gapp2
STAR Study of Radiotherapy for Wet Age-related Macular Degeneration Age-related macular degeneration (AMD) affects patients over 50 and is the leading cause of sight loss in the UK. The condition develops when the part of the eye responsible for central vision (the macula) is unable to function as effectively as it used to. Wet AMD – the more serious form of the condition – occurs when abnormal blood vessels form underneath the macula and damage its cells. Without treatment, vision can deteriorate within weeks or even days. Currently, the standard treatment for wet AMD is injections into the eye. These are initially given monthly and, in some patients, may be necessary for several years. The STAR study will use a new treatment called stereotactic radiotherapy (SRT). The SRT device delivers a one-off treatment of radiation to the affected eye. In terms of total body exposure to radiation, the dose is low, comparable to a dental X-ray, but is more concentrated within the macula. This treatment is combined with the standard eye injections. The aim of the study is to determine whether SRT reduces the need for such regular injections. Previous studies have already shown that in carefully selected patients SRT can reduce eye injections by about half, with many patients needing no further injections at all, and vision was better than in those who only received eye injections. If proved successful, the new treatment will not only be more convenient for patients, who currently have to visit an eye clinic on a regular basis, but it will also be more cost-effective for the NHS. Each dose of the injection costs around £800 and needs to be repeated several times each year, whereas the radiotherapy treatment costs £1,250 but is required only once. Contact Judith Abrams on 01296 315832 or the study team via email kch-tr.star-study@nhs.net
Meet Ben Lodge, Specialist Heart Failure Clinical Research Nurse Where and when did you train as a nurse/midwife? Sheffield University What were you doing before you started working in research? I started in General Medicine/Renal; Heart Emergency Centre, Heart & Lung Transplant St Vincents, Sydney; Heart & Lung Transplant Brompton & Harefield; Electrophysiology Liverpool What type of research projects you have worked on? I helped set up the first English NHS accredited Phase I research Unit at Royal Liverpool Hospital. Then I moved to Imperial College Hospital to help run the Phase I Experimental Medicine Clinical Research Facility that worked on Ebola vaccine, Malaria, Oncology, HIV and Sickle cell gene therapy trials Have you ever enrolled in a research project yourself? Only observation/biobank studies, I have had a research MRI done. Why do you think research is so important to the NHS? It is one of the ways in which we can improve outcomes and practice over time. What I find really interesting is not the intended outcomes but the incidental findings that often lead to new and interesting discoveries. What do you think are the benefits to patients of taking part? Without being negative, often in the early phase trials there is no immediate benefit to patients it is purely altruistic that they take part. There is much made that patients in trials “do better” but there is an element of the strict eligibility criteria excluding the sickest patients. That said patients benefit from closer follow ups, and monitoring which will improve care and make new treatments safe. Patients get access to medicines that they may not have the opportunity to take in routine care. What’s your dream holiday destination? Torquay