Within the UK, 32 out of every 10,000 children are living with a life-limiting condition or life-threatening illness (LLC/ LTI).
Research, from genetic studies to drug trials is vital to improving care for these children and their families, but the inclusion of this vulnerable population into research studies has been difficult.
A new BITE – a postcard “need to know” summary of our published research – shares the perceptions of clinicians and research leaders on their perceptions of the barriers preventing children and their families becoming involved in research.
The BRAVES team surveyed palliative care clinicians, often “gatekeepers” to children and their families getting involved in research asking them
‘In your experience, what have you found to be the biggest barriers to palliative care research with children?’
We also consulted Chief Investigators (CIs) – leaders of NIHR research studies involving CYP with LLC/LTI and their families. CI’s were invited to complete an anonymous, web-based questionnaire and three key barriers to research were emerged, alongside four potential solutions.
Dr Jessica Sheringham has research interests in questions that have an impact on reducing inequalities in healthcare and access to appropriate healthcare. Her research spans respiratory disease sexual health and cancer, using both qualitative and quantitative research methods. She is also an honorary consultant in public health at Barking & Dagenham, Havering and Redbridge Clinical Commissioning Groups.
Local research bodies join forces with patient partners to deliver an introduction to research
We ran our Becoming Research Active course on November 14th offering our partners in front-line care a primer in research and the research process.
CLAHRC North Thames Academy collaborated with other NIHR funded research organisations in the region – the Clinical Research Network and Research Design Service – to deliver the training, with vital contributions from patients and members of the public.
The day-long course is structured to reflect the research cycle – from defining a problem, through securing funding to dissemination and evaluation. Attendees, who came from across the NHS and local authorities were encouraged to bring a research idea they could develop over the course of the day.
“The course has provided me with lots of resources and a clearer sense of direction, which is what I hoped for.”
We joined forces with NIHR infrastructure across the North Thames region – the Research Design Service which provides support to those preparing research proposals for submission to peer-reviewed funding competitions for applied health or social care research; and the local Clinical Research Network which makes it possible for patients and health professionals across England to participate in clinical research studies.
The training aimed to highlight the processes involved in planning and carrying out successful research, in partnership with patients and the public, and signpost attendees to the support available to them.
We were also very fortunate to have some patients and members of the public bringing their unique lived experience – of working with researchers, leading research and being a clinical trial participant respectively to offer tips to attendees.
CLAHRC Research Advisory Panel member Ayath Ullah (below left) joined the CLAHRC’s involvement officer Steven Towndrow to offer a lay perspective on how researchers can make patient/public advisers welcome and valued.
One of the CRN’s Patient Research Ambassadors (PRAs) Phillip Wingfield spoke about his experience of taking part in two clinical trials, offering a perspective from a participants point of view.
We were also joined by community researchers Sultana and Farzana from the NEON project, where they have led research into improving nutrition practices among the Bangladeshi community in East London.
“Useful to have a range of speakers with varied experience. Great place to come prior to starting research.”
Researchers, staff and health professionals delivered a range of presentations with small group work and regular exercises to reinforce learning, and were on hand to facilitate each part of the day.
Feedback from attendees was overwhelmingly positive;
“Very useful and informative.”
“Lots of information to move forward my idea. Thank you very much.”
“A good overview of processes. Helpful to know all the help/support available.”
“Very well designed and delivered. It kept my attention throughout. The content/sessions were well balanced and provided me with the basis to build on”
We are offering follow up sessions with attendees to support the development of research ideas into action, and we plan to run the course again in summer 2019. Get in touch to join our mailing list to find out when courses are planned – clahrc.academy@ucl.ac.uk.
Young Commissioners residential training for Dudley Council Integrated Commissioning hub, 2-4 November 2019
The “Young Commissioner” model – which sees children and young people work with funders and planners of local services to ensure they meet the needs of those in their age group – is gaining traction among local authorities and the NHS.
CLAHRC North Thames child and adolescent researchers are training and supporting staff and young people based at Dudley Council, West Midlands to establish and embed the Young Commissioner model in their Integrated Commissioning Hub. This follows our work with a previous cohort of young people in East London to improve diabetes services.
Over the weekend of 2-4 November this residential event kicked-off the training programme for the young people using the principles of ‘learning by doing’. This has involved blending training with real-time commissioning activities.
The Young Commissioners worked with graphic facilitator Penny Mendonca on public speaking and presentation skills, and the different communication channels they could use.
Adult learners have also accessed project-specific eCPDs developed by the team to help them better align Council systems, structures and processes to optimise the impact and sustainability of this initiative. The adoption of the Young Commissioners model marks an area of innovation in how they work together with the public to commission children and young people’s services.
There is a strong commitment in Dudley Children’s Services to the active involvement of children and young people – the initiative forms part of Dudley Children’s Services Active Involvement strategy 2017, and the Children and Young People Market Position Statement 2018-2022.
“Dudley is a Borough where co-production with children and young people’s their rights are realised, and their views shape decisions made about their lives and those of their families.”
Dudley Children’s Services Active Involvement strategy 2017
Do you need to demonstrate the economic impact of projects in your organisation?
Do you want to assess the outcomes and sustainability of a new service?
Are you tasked with carrying out an economic evaluation, but don’t know where to start?
This one day, hands-on workshop aims to provide an introduction to addressing these challenges. It is run by the NIHR CLAHRC North Thames Academy. The course is aimed at staff in frontline services in the NHS and local government, who have limited experience of conducting evaluations and decision making analysis.
After attending this course, you will have the skills and knowledge to undertake your own simple economic evaluation of a local intervention or service, and be able to appraise other evaluations.
The course will cover:
introduce the basic principles of economic evaluation methods
explain how to assess the costs of an intervention/service
explain how to measure and value outcomes of an intervention/service
give practical examples of economic evaluation analysis
help to understand how to use economic evaluation in decision making
offer the opportunity to discuss in small groups the economic evaluation you are doing or thinking of doing. A facilitator will help scope your economci evaluation, draft its core elements, identify the data you will need to use, think how you could overcome information or data gaps.
This workshop is suitable for staff from NHS Trusts, Local Authorities and CCGs who need to evaluate local programmes or services from an economic perspective as part of their work. It is not aimed at academics and/or researchers.
In order to be most beneficial for the participants, we invite applications from individuals who are carrying out or soon will need to carry out an economic evaluation of a service/intervention. In the selection process, we will give priority to applications providing a detailed description of such projects. Groups of people working on the same project are encouraged to apply.
No previous knowledge of economics is required (or experience of study design and statistics), however an interest in economics and being comfortable with numbers is desirable.
All participants will receive a certificate of attendance.
Cost – This course is free for staff working in NIHR CLAHRC North Thames partner organisations (please click here to see a list of our partners). There is a delegate fee of £250 for other attendees.
Please note, a cancellation fee of £100 will be charged to both partner and non-partner delegates in the event of non-attendance without notice after 5pm, Wednesday 20th February 2019
A new publication highlights our work in evaluating a new patient pathway with the potential to provide clinicians with real-time data on inpatients at risk of Acute Kidney Injury.
AKI is common (affecting up to 20% of UK acute hospital admissions); associated with significant morbidity and mortality, and expensive – excess costs to the NHS in England alone may exceed £1 billion per year.
Researchers at the Royal Free Hospital (RFH), part of London’s Royal Free London NHS Foundation Trust (RFLFT) have developed a digitally-enabled care pathway for inpatients, incorporating a mobile software application – the “Streams-AKI” app – that “reads” routinely collected serum creatinine data in hospital inpatients and alerts health professionals where a patient is at risk of AKI.
We have published our protocol for this evaluation, and a postcard-style “need to know” summary – or BITE – of our research plans. We’ll measure its success for patients (in terms of speed and effectiveness of their diagnosis and care), NHS staff and clinicians (to find out what they think of the pathway) and for the NHS in terms of patients’ length of stay and costs to the service.
The protocol and BITE will interest NHS staff and clinicians working in renal care, as well as those interested in the potential of technology to improve detection and diagnosis via routinely collected data
We’ve been working with young people to transform how local health diabetes services are designed and delivered for their age group.
CLAHRC researchers based at the University of East London worked with local young people to understand the options and barriers they face when given a diagnosis of diabetes and using NHS services.
We recruited a mixed young research team – in terms of age, ethnicity, faith-identities and backgrounds – who worked together over one year to help commissioners and providers better understand and address the options and barriers of delivering a ‘perfect’ care pathway.
You can see the results of this work in our latest BITE – a postcard summary of a CLAHRC research paper.
This is part of our wider work to co-design community-based diabetic services responsive to the needs of children and young people
