Involving patients and the public in writing academic papers

Proving that there is always value in involving patients and the public in research, however complex and technical the topic may be, the CLAHRC’s lay document reviewers have been acknowledged in a prestigious British Medical Journal paper.

CLAHRC patient and public partners who make up our “virtual” panel of reviewers were involved in producing an academic paper published in the prestigious journal – the Standards for Reporting Implementation Studies (StaRI) statement.

The final published article in the prestigious British Medical Journal

In order to improve the way studies are reported in journals, researchers  developed a checklist to include all the information an author needs to report in order to make sure that readers are clear on:

  • how the research was done
  • how the results were analysed
    and
  • what the results might mean for treating conditions or health services

Researchers at the Asthma UK Centre for Applied Research developed the STARI checklist to help researchers report implementation studies –  studies that develop strategies to implement interventions that have been shown to be effective but which are not yet part of routine practice.

This was described as a “difficult” request for patient and public involvement by researchers due to the complexity of the material.

Our reviewers were asked to rate the paper under a number of headings including

  • the importance of the topic
  • the papers potential to impact patient care
  • how easy the check-list would be for researchers to use
  • how easy the paper was to read and follow

The reviewers feedback on the draft was “very helpful” and they were duly acknowledged in the final publication which we believe sets a good precedent for future PPI in writing academic papers.

Full paper details

Pinnock Hilary, Barwick Melanie, Carpenter Christopher R, Eldridge Sandra, Grandes GonzaloGriffiths Chris J et al.
Standards for Reporting Implementation Studies (StaRI) Statement

 

“Getting help for forgetfulness”: Encouraging timely help-seeking for dementia in Black African and Caribbean families

A project under our mental health theme focuses on improving the care of Black African and Caribbean people with memory problems, which can be an early warning sign for dementia. We know that Black African and Caribbean elders develop dementia earlier, and seek help later than their white peers.

This delay can greatly impact access to care and support, and reduce the independence of dementia patients prematurely.

We have carried out extensive engagement work within this community – running focus groups and conducting interviews to find out the perceptions and beliefs that prevent people visiting their GP when memory problems first arise.

As well as disseminating our findings we have concentrated all the learning from the project into a new leaflet “Getting help for forgetfulness“.

We co-designed this leaflet with patients and the public and it aims to encourage health-seeking behaviour among elders encountering memory problems.

It answers questions about symptoms, sets out what help is available and why you should visit your GP, and provides useful information and contacts.

We trialled the leaflet in patients without a diagnosis of dementia in several GP practices and they liked it.

We can provide printed copies to the NHS, community and voluntary groups and charities – just contact us with your needs.

Email Moïse Roche to order copies of the leaflet – m.roche@ucl.ac.uk

Evaluating a Healthy Schools programme – our report and recommendations published

School-based interventions to increase health and wellbeing

The health and wellbeing of school children is a pressing concern in England, with a  growing prevalence of obesity and diabetes in childhood. It is also widely recognised that a child’s emotional health and wellbeing influences their cognitive development and learning, as well as their physical and social health and mental wellbeing in adulthood.

These increased concerns, aligned with a better recognition of the emotional and mental health needs of children, led the Greater London Authority (GLA) to develop and co-ordinate a school based health programme to improve health and wellbeing for all pupils in London.

The result was the development of the GLA’s Healthy Schools London programme (HSL) launched in April 2013 and co-ordinated by the Greater London Authority (GLA). The programme encourages schools to adopt a whole school approach to combat the specific health and wellbeing needs of their pupils by developing their policies and procedures.  HSL recognises and rewards the schools’ endeavours through a system of awards: Bronze, Silver, and Gold.

A CLAHRC North Thames project recently completed a two-year evaluation of the programme. The aim of the evaluation was to assess the contribution of the programme to improving educational attainment, and health and well-being, among schoolchildren in London. It was funded jointly by the GLA and the CLAHRC, and was conducted between 2014 and 2016 by Dr Harry Rutter and Dr Andrew Barnfield from the London School of Hygiene and Tropical Medicine (LSHTM).

We conducted literature reviews, focus groups in 20 schools, interviews with 6 directors of public health and directors of children’s services, focus groups with borough leads, interviews with the GLA core team and borough leads, and two assessment visits to special schools. We also conducted an online survey across all participating schools, with a total of over 450 responses.

Was HSL effective in its aims?

Our evaluation

  • Assessed the potential for the HSL programme to influence educational achievement, promote healthy lifestyle behaviours, and reduce health inequalities in London
  • Investigated the extent to which becoming a Healthy School is associated with changes in school-level policies, and activities.
  • Assessed the nature and level of engagement with the HSL programme by schools, including any differential uptake by socio-economic factors, and to understand the drivers and barriers to becoming a Healthy School
  • Provided recommendations to inform the ongoing development of the HSL programme

The evaluation concluded that HSL provides a valuable mechanism to encourage change at school level. Among a suite of recommendations, the evaluation suggested that:

  • HSL would be strengthened by encouraging schools to work more closely together.
  • A mentoring programme could help to spread best practice between schools,
  • There is scope for stronger links between school sand local communities.
  • The implementation of a programme to enhance health and wellbeing provision in early year’s settings could provide an additional mechanism for health improvement, and promote school preparedness among the capital’s children.

Read the full report and recommendations

 

London Evening Standard features CLAHRC research on asthma

The London Evening Standard features CLAHRC research in a story on the impact of air pollution on the capital’s younger asthma sufferers.

Our newly published research highlights poor asthma control and knowledge among London secondary school pupils and is referenced in the piece, which also includes contributions from CLAHRC researchers Professor Jonathan Grigg and Kate Harris.

The paper has campaigned extensively on the quality of London’s air, and the health impact on young and developing lungs.  Poor asthma control, as highlighted in our work, can make things worse for those already living with respiratory conditions.

Professor Jonathan Grigg, CLAHRC child health theme and Principal Investigator on the study runs a severe asthma clinic at the Royal London hospital, said: “If you have asthma and it is not well-controlled, you are going to be more likely to suffer from these days of high pollution.If you have poor control, you run a risk of having a severe episode. The number of children who die is very small, but we are not really treating asthma as seriously as we should. In other countries, they say, ‘If you have got asthma, make sure you take your medication on the next few days’. That is what I would do. I would say, ‘There is an air pollution event. Make sure you take it.’ ”

Another researcher on the project Katherine Harris was quoted in the ES story, saying it was the first childhood asthma study carried out in schools: “We know from previous work about asthma in children that there were high levels of hospitalisation and asthma-related deaths were higher than Europe.One reason could be due to poor levels of asthma control in children. What we concluded is that there is a prevalence of poor control in children. There are also low levels of knowledge. A lot of children don’t understand what their medication does or how it was helping them.”

CLAHRC research reveals poor asthma control and knowledge common among London schoolchildren

Newly published CLAHRC research has revealed that nearly half of secondary school pupils living with asthma have sub-optimal control of their condition and gaps in knowledge around symptoms, triggers and treatments.

The findings, published in the Journal of Asthma,  emerged from the results of nearly 800 pupils from across London schools completing questionnaires incorporating the asthma control test (ACT) – a validated tool for assessing control in asthmatic children aged 12 years and older. Using the ACT, we sought to assess asthma control and knowledge in London secondary school children.

Results showed a high prevalence of poor asthma control, poor asthma knowledge, and a high morbidity in London children with asthma.

799 children with doctor-diagnosed asthma completed the questionnaire;

  • suboptimal asthma control was reported by 49.6% of students
  • over a third (42.4%) prescribed a short-acting β2-agonist inhaler felt uncomfortable using it at school, and 29.2% reported not using this inhaler when wheezy
  • 56.4% of those with regular inhaled corticosteroids did not take them as prescribed, and 41.7% did not know what this inhaler was for.
  • suboptimal control was associated with a greater proportion of students reporting that they were “somewhat”, “hardly” or “not at all” comfortable using inhalers at school (52.7% vs 29.1 %) and outside school (22.8% vs. 14.8%)

Since suboptimal control by ACT is a risk factor for future severe exacerbations, and should prompt more intense clinical monitoring, our results suggest a need for interventions aimed at addressing poor asthma control in UK schoolchildren.

Read the full paper below

Asthma control in London secondary school children

Katherine Harris , MSc, Gioia Mosler Centre for Genomics and Child Health, Blizard Institute, Barts and The London School of Medicine and Dentistry, London, UK , PhD, Samson A. Williams , BSc, Abigail Whitehouse , MBChB, Rosalind Raine , MBBS, PhD & Jonathan Grigg , MD

Journal of Asthma

http://dx.doi.org/10.1080/02770903.2017.1299757

Introduction to Economic Evaluation Workshop

On 22 March, the NIHR CLAHRC North Thames Academy held its first face-to-face course of 2017, with a workshop on Economic Evaluation held by Professor Stephen Morris, Dr Elena Pizzo, Dr Estela Capelas Barbosa, Nishma Patel and Nicholas Swart, all from UCL.

The workshop was oversubscribed, and on the day, we had 28 participants with specialists from a wide range of organisations including GPs, hospitals, public health departments, and Clinical Commissioning Groups.

Throughout the day, the tutors guided the delegates through the essential aspects of designing an economic evaluation of a health service or intervention. Session topics included measuring costs, measuring outcomes and measuring cost-effectiveness, with practical exercises to supplement the theory.

 

Tutors (from left to right): Estela Capelas Barbosa, Elena Pizzo, Stephen Morris and Nick Swart

In the afternoon, delegates discussed in groups the economic evaluations they are planning to carry out, and had the opportunity to share ideas with colleagues from across different sectors and organisations. The wealth and range of experience in the room led to many interesting in-depth discussions, and shed light on a variety of issues and perspectives.

Many thanks to all the delegates who attended!

 

Very comprehensive course and very high level of subject knowledge in the teaching team

Excellent coverage and pace. Assumes a capable audience and provides a stimulating day.”

Really helpful introduction to concepts and will really help with own project

We were really pleased to receive positive feedback from participants, and are in the process of planning the next Introduction to Economic Evaluation workshop to be held on 8 November 2017 – details coming soon. Visit our Academy page to find out more about us and our other upcoming workshops.

To find out about future Academy courses visit our website or email clahrc.norththames@ucl.ac.uk to join our mailing list.