Research and Innovation
Winter 2017-18
Anna’s Research Story Can you tell me a bit about yourself? I worked in banking & accounts and retired in 2008. Up until recently we had a narrow boat which kept us active and busy. Now I enjoy keep fit, walking and gardening. A few months ago I found my energy levels getting low and my skin or eyes were sometimes yellow. My GP sent me for blood tests which caused huge concern. What type of study are you taking part in? The UK Autoimmune Hepatitis Cohort (AIH-UK) observational study. It’s where the immune system develops a fault and starts to attack parts of the body, in my case the liver. This is a rare disease which only affects around 10,000 people in the UK.
Anna with Research Nurse, Ruth Penn
How did you find out about the study? My Consultant, Dr Maggs, asked if I would like to take part when I was in clinic then Ruth Penn the Research Nurse met me at Stoke Mandeville when I had my biopsy. Why did you decide to take part? Being a fairly rare disease I felt strongly I should participate especially and there was a strong possibility it could be genetic. Therefore my children & grandchildren could be affected. What do you have to do? I have regular blood tests to monitor my treatment and an extra one is sometimes donated to the study. When I had my liver biopsy and extra bit of sample was also taken for the study. I’m followed up for 2 years and have to fill in questionnaires about how I’m feeling on some visits. What would you say are the benefits to you? The benefits to me are that I’m being closely monitored. Any questions I have are fully explained by Research Nurse Ruth, which is very reassuring. What would you say to anyone else thinking about taking part in research? Do not hesitate. You feel you are helping the research identify new test & treatments for the benefit of others. More information about Autoimmune Hepatitis can be found on the study website: www.uk-aih.com
What is a Research Ethics Committee? This is an independent group of people (with and without a medical background) who are appointed to review and approve research study proposals. Their role is to ensure studies comply with the laws of research governance, protecting patient rights, safety and well-being as well as promoting research that is of benefit to patients, science and society. 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
COSIMO – Cancer Associated Thrombosis The purpose of the study is to collect certain information from patients to help assess how satisfied they are with their treatment of blood clot or blood clot prevention using Rivaroxaban therapy. In total, about 500 patients will be asked to participate worldwide. This study is non-interventional, meaning that data documented are routinely collected in daily practice from examinations or diagnostic tests; no additional examinations or tests need to be done. For information contact Dr Renu Riat via the Haematology Department on 01296 315514
Patient Research Ambassador, John P Smith
2017 Cardiac Research Surveys
Research Workforce Developments The Thames Valley/South Midlands Clinical Research Network Group (NIHR), Invited a number of Patient Research Ambassadors to a workshop in November at the Nuffield Hospital. The aims of the workshop were to understand what training was available for nursing staff involved in research, and how Research Ambassadors might play a role in certain aspects of that training.
History
We learnt how the training on offer was broken down into three categories: for new starters, those nurses who had been in a research role for six months to two years and finally on-going professional development. The workshop focussed on training in the six months to two years category, and particularly on the courses entitled, ‘Next Steps in Clinical Research’ and ‘Let’s Talk Trials’. The first course is two days consisting of twelve modules. The following three modules: ‘Participant Advocacy and Compassion in Practice – the Role of the Clinical Research Practitioner’, ‘Patient Information and Informed Consent: an overview’ and, ‘Recruitment and Retention of Participants into Clinical Trials’, were those where the workshop leaders felt that inputs from Patient Research Ambassadors could be helpful in ensuring that research nurses were hearing the patient and public voice during the training. Several Research Patient Ambassadors have volunteered to support this training by attending those modules with the research nurses.
Results
The workshop also covered the one day course, ‘Let’s Talk Trials’. This course teaches the SPIKES model to deliver information to participants re trials, to ensure that we are truly gaining informed consent. To find out more about the role of the PRA see the NIHR website: https://www.nihr.ac.uk/patients-and-public/how-tojoin-in/patient-research-ambassadors/
Every year, more than half a million people help the NHS improve healthcare by taking part in clinical trials. Clinical trials are an essential part of medical research. They help us develop better treatments, which improve healthcare for adults and children. This can lead to real breakthroughs that save lives and improve quality of life. The Cardiac Clinical Research Team conducted 2 surveys (for patients and staff) to assess their knowledge and experience of trials run within the Cardiology Department at Wycombe hospital.
• 54% of patients we asked, who participated in a study, had not previously been aware that BHT participated in clinical trials. • 97% of those patients said they were provided with sufficient information to agree to participate and 95% had no subsequent doubts about their participation. • 100% of staff surveyed rated active cardiology trials recruitment as important. • 100% of staff said that routine measurement of patient outcome is important and 80% consider that clinical research increases the quality of patient care
Meet the new Stroke Research Team Sonia Dayal
When you are pregnant and have diabetes, there is a higher risk of problems with the pregnancy compared to those who are pregnant without diabetes. If you have good control of your blood sugar levels before and during your pregnancy, this risk is smaller. This is a study looking at the use of an insulin called Degludec (Tresiba) compared to one called Levemir in pregnant women with type 1 diabetes. Recruits will be asked to take blood sugar measurements every day which most diabetic patients do routinely. They will also be reviewed regularly during Antenatal Clinic appointments and phone calls with the study team. For more information contact: Kim Davenport, Diabetes Research Nurse on Tel: 01494 425750, Mobile 07342 085272 or Julie Tebbutt, Research Midwife on Tel: 01296 418160
Help us understand more about the most common cause of coughs, cold and chest infections in babies If you are pregnant or your baby has been born in the last week you could help us with this vital research study Find out more via the website www.babyrsv.org or contacting the local study team on email: Chris.cleaver@buckshealthcare.nhs.uk
What were you doing before you started working in research? I was working as a deputy sister on the Stroke Unit at Wycombe & prior to that I was at London’s Queen Square Neurosurgery unit. What do you enjoy about working in research? Research makes a difference. It makes you feel important/special knowing that you are contributing to the discovery or development of something that can make a difference in peoples lives. It is exciting to be a part of an adventure that will change the face of the future. What do you think are the benefits to patients? Research participation brings benefits to patients and society as a whole in leading to advances in health care. Clinical Research studies are the reason medical care has improved extensively in the past few decades. What’s your dream holiday destination? Mauritius
Iona Burn What were you doing before you started working in research? I studied genetics at Leeds University with a research career in mind. I taught in local secondary schools then moved to work for NHS in 2013 and worked for the Stroke department on their patient audit systems providing reports to NHS England and contributed to the recognition of the unit’s status as one of the top in the country. What type of studies are you working on? Currently we have mostly observational studies involving questionnaires completed by the patients including mood and cognition tests. Why do you think research is important to the NHS? Research is the way forward. new discoveries and treatments mean better care for patients and outcomes for recovery. What’s your dream holiday destination? Somewhere exotic with lots to do. To find out about stroke research at the Trust call the team on 01494 426798.
The big news from the obstetric research world is that one of the studies we participated in has just been published. The study in question is MiNESS. The aim of this study was to identify modifiable risk factors for stillbirth. We already know some of the risk factors for stillbirth. These being advanced maternal age, obesity, ethnicity, cigarette smoking, reduced antenatal care attendance, low socio-economic status, reduced foetal movements, small for gestational age and previous stillbirth. Sadly 1 in 250 pregnancies will end in stillbirth after 28 weeks. This rate has not declined significantly despite advances in maternity care. The study consisted of a questionnaire that was given to 291 women who had had a stillbirth and
733 women with healthy on-going pregnancies. The study was conducted in 41 different units throughout the UK. This is the largest study that has been conducted into causes of stillbirth; however 3 significant studies (1 in Australia and 2 in New Zealand) have shown similar results. The questionnaire was designed to look at various life style issues, demographics and previous pregnancies. Within the questionnaire, women were asked specifically about sleep patterns. They were asked about sleep positions, duration of sleep, how many times they got up to use the toilet and day time naps.
The results have shown that going to sleep on your side during pregnancy (after 28 weeks) reduces the risk of stillbirth. It is important to emphasise that it does not matter what position you wake up in. It is solely the position you go to sleep in. It also doesn’t matter whether this is your right or left side. Although it is not known exactly why sleeping on your side is better for the baby it is thought that when women sleep/lie on their back the baby and the uterus put pressure on the main blood vessels that supply the uterus, and this in turn can restrict blood flow/oxygen to the baby. The Midland and North of England Stillbirth Study (MiNESS) was funded by a grant from Action Medical Research, Cure Kids, and Sands. The charity Tommy’s has produced literature and has also produced a sleep on side animation. This is available on their website, www.tommys.org.
The results of the MiNESS study were published in the British Journal of Obstetrics and Gynaecology on 20.11.2017 and can be accessed via http://onlinelibrary.wiley.com/doi/10.1111/14710528.14967/full For information please contact Julie Tebbutt, research midwife on 01296 418160 or Email Julie.tebbutt@buckshealthcare.nhs.uk