Research Design Service North East and North Cumbria – Success Maker Service
Case Studies of researchers who have worked with Research Design Service North East and North Cumbria
Demonstrating excellent PPI in research
Dr Charlotte Currie was recently awarded an NIHR Doctoral Research Fellowship. Her research will focus on care pathways in acute dental pain, aiming to develop an intervention to encourage patients to visit the dentist for regular preventative dental care over and above emergency care. A key element of Charlotte’s application was incorporating Patient and Public Involvement (PP). Prior to submission of her application Charlotte worked with the NIHR Research Design Service (RDS) to set up a consumer panel where members reviewed Charlotte’s lay summary and provided feedback on the proposed project. Charlotte then created a further specialised PPI panel with Voice North members to get further feedback from patients with experience of emergency dental care. The feedback received was invaluable and changes were made to the application. Feedback included:
The intervention should be co-designed with patients and public rather than being designed solely by the researchers.
The true extent of dental infections and how they could be life threatening should be highlighted in the application to demonstrate just how important this research is.
Social media should be used for dissemination of research findings for the target demographic.
Ahead of her fellowship interview, Charlotte also obtained advice and guidance from the Faculty Engagement team and created a PPI plan that demonstrates excellent PPI in research. Charlotte said of her experience:
“As a researcher you want your research to have the best possible output and to really improve the public/patient experience. The only way you’re going to know that what you’re doing will make a difference is to include the public from the start. The Research Design Service and Faculty offer researchers lots of support in this and for me it’s been an eye opening but brilliant experience. I’ve really developed as a researcher as a result. I think involving the public makes you see the bigger picture, and certainly makes you think of things that would never have crossed your mind without them.”
For patients who survive head and neck cancer, side effects of treatment may limit the ability to eat and swallow, to consume certain foods, to work, travel and socialise around food. This study will include food workshops with a research chef and research team to explore the potential of ‘progressive cuisine’ to improve head and neck cancer survivors’ eating and experience of food. Advice focused on how to design and integrate the quantitative and qualitative elements of the project, and on maximising benefit for both current participants (as part of the research process) and for future patients.
DEVLOP UK – awarded NIHR HTA funding
Currently, only 1 in 5 donor lungs available in the UK are used in lung transplants. One of the reasons for this is that damage may occur, and poor function develop, around the time of death. Unfortunately, many patients who would benefit from a lung transplant die before suitable donor lungs become available. EVLP is a technique that allows previously unusable donor lungs to be used. Initial results suggested good patient outcomes but a large, well conducted study was needed before routine use. Support focussed on identifying experts in clinical trial design, statistics and health economics who helped build the research team and on refining the proposal. The official study launch generated substantial media interest. The findings of this study have been published in the Health Technology Assessment Journal.
FFA-UK – awarded NIHR RfPB funding
The NICE Bipolar Disorder guidelines recommend psychotherapy in addition to the treatment mainstay of medication and note the importance of family involvement in the management of young people with EOBD. There are however no UK studies of a family-based approach to psychotherapy for adolescents with bipolar disorder delivered in an NHS context. The research aimed to establish the feasibility and acceptability of using a family focused treatment (FFT-A UK version) as an adjunct to pharmacotherapy in the management of EOBD; and to assess the attitudes of young people and their families towards the requirements of research participation. Advisers were involved from the inception of this research; supporting the applicant to prepare an application for funding for pre-pilot work and then the RfPB application. The findings of this study have been published in the Pilot & Feasibility Studies Journal.
Aortic valve replacement (AVR) is one of the most common cardiac surgical procedures performed worldwide. Over one third of patients undergoing the conventional procedure develop clinically significant bleeding and require a transfusion, which can have adverse effects. Small scale retrospective studies have shown that blood loss and transfusion requirement is significantly less with a minimally invasive procedure; a robust trial of this is imperative. The MAVRIC trial will determine if manubrium-limited ministernotomy should be adopted as best practice for patients requiring AVR surgery. Advisers were instrumental in refining the research question, study design and statistical analyses. Trials of cardiac surgical procedures present unique challenges and expert input was crucial.
UK Mini Mitral – awarded NIHR HTA funding
Heart surgery to repair one of the valves in the heart (the mitral valve) is commonly performed in the NHS. To repair the valve, the operation usually involves cutting the breastbone completely (from the collar bone to the bottom of the breastbone); this is called a sternotomy. An operation has been developed which means that the valve can be repaired using a much smaller cut on the side of the chest. This operation is called a mini-thoracotomy. It is currently not known which operation is better for patients and for the NHS because there is no good research to show what effects the two different types of surgery to access the heart and repair the valve have on patients. This is a multi-centre, randomised controlled trial, comparing mitral valve repair (MVr) via minimally invasive thoracoscopically-guided right minithoracotomy (intervention under study) and mitral valve repair via conventional median sternotomy (usual care) to determine return to usual return to usual activity based on change in the SF36v2 physical functioning scale at 12 weeks following surgery. 400 patients across 8 centres will be randomised in a 1:1 ratio between the intervention and usual care arms, stratified by baseline SF36v2 physical functioning scale and presence or absence of Atrial Fibrillation.
SORTED – awarded NIHR RfPB funding
Hypothyroidism (underactive thyroid) affects up to 16% of individuals. Currently, all individuals with hypothyroidism are treated as a uniform group irrespective of age. There are several compelling reasons as to why this may not be appropriate, one of which is the normal range of blood Thyroid Stimulating Hormone (TSH) level. The TSH level is a marker of thyroid hormone replacement, is derived from healthy younger people and may not be appropriate across all age ranges. Based on the findings of this feasibility study it was determined that a future definitive randomised controlled trial is possible. To recruit to time and target it would require buy-in from a large number of general practices and the provision of patient study visits at home rather than hospital out-patients. The feasibility study also provided information on withdrawal rate and that to achieve the target TSH levels, several dose adjustments may be required.
Family based support to build capability and resilience in family carers of adults with learning disabilities and challenging behaviours: collaborative research – awarded NIHR RfPB funding
The aim of this research is to conduct a formative evaluation, using participatory approaches, of a new Family Based Support Programme for family carers of adults with learning disabilities and challenging behaviours. The intervention will incorporate aspects of Positive Behaviour Support and Acceptance and Commitment Therapy with a focus on mindfulness. The inclusion of the Positive Behaviour Support element was a direct outcome of the strong public involvement in the development of the funding application – parent carers advised that family members would be less likely to engage with an intervention that they saw as primarily “for them”. The research will provide qualitative insights regarding the elements of the programme that are most effective in supporting carers and building their resilience, and will also gather information regarding the criteria for success from the carers perspective.