Clinicians and research leaders’ views on barriers to involving children and families in research

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.

Barriers to Research Access: Voices, Experiences, and Solutions (BRAVES) is a CLAHRC study focusing on improving access and participation in research for children and young people with LLC/LTI and their families.

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.

 

Evaluating a digitally-enabled care pathway for Acute Kidney Injury

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

Beyond searching- supporting NHS colleagues to contribute to systematic reviews

We recently collaborated with colleagues at Peninsula CLAHRC to deliver a successful ‘Beyond Searching’ course.

Members of the PenCLAHRC Evidence Synthesis Team (EST) travelled to London to work with CLAHRC North Thames’ Dr Antonio Rojas–Garcia in delivering the workshop to 19 librarians from the NHS and various universities.

Beyond Searching was devised 5 years ago by members of the EST who have been running annual workshops ever since. The course is designed to show health information professionals that they already have the skills to effectively contribute to systematic reviews –  reviews aiming to find as much as possible of the research relevant to the particular research question, and to identify what can reliably be said on the basis of these studies. The training gives them the confidence to get involved in the process and to advise others.

Librarians and other information professionals are highly skilled and motivated individuals with a drive to learn about new technologies and ways of working. They already have the skills needed to contribute to systematic reviews so our course is more about how they apply those skills. ‘It is always a joy to teach this workshop – often we learn a lot ourselves in the process – and it was particularly good this time to get the chance to collaborate with colleagues from CLAHRC North Thames.’

Morwenna Rogers (EST member)

This was the second year that the course followed a flipped classroom model, which EST members learned about during their visit to the University of Michigan two years ago. The model frees up classroom time for discussions and active learning, by making some of the foundation lectures and reading material available to participants in advance.

Attendees were asked to complete a series of online tasks prior to the course, which introduced them to key concepts of systematic reviewing and comprehensive searching. This enabled attendees to focus on more detailed aspects of search techniques during the workshop.

Guest speaker Claire Stansfield from the EPPI-Centre was also invited to discuss the use of automation (employing machines, computers, or robots to help researchers identify relevant papers), and its implication for reviews in the future.

The beyond searching team were delighted with the positive feedback they received. One attendee said that it was:

The best training [they] have ever attended

Another attendee planned to use the knowledge she had gained to change practice in her own place of work, and another thought that the flipped classroom model was excellent preparation for the face to face teaching day.

Dr Rojas – Garcia (below) praised the cross CLAHRC co-operation behind the delivery of this workshop, remarking:

It was great to spend the day collaborating with colleagues from PenCLAHRC. I considered it a very positive experience, it has been really encouraging to see how other colleagues teach about systematic reviews.’

To read more about the Beyond Searching workshop  collaboration, visit the EST blog.