On Tuesday September 26th CLAHRC North Thames’ public and patient partners took part in a learning exchange visit to Peninsula CLAHRC (PenCLAHRC).
The trip to PenCLAHRC’s Exeter office was part of our wider efforts to make connections with other CLAHRCs, especially those serving different populations in settings different from ours.
A delegation of CLAHRC North Thames public partners, staff and students (below right) visited colleagues at PenCLAHRC to make connections, compare notes on involving people in research and discuss future working together. Eight members of our lay Research Advisory Panel joined our PPI/E officer Steven Towndrow and CLAHRC PhD Nehla Djelloui who is investigating involving people in large scale service change in the NHS.
We were hosted by
- The PenCLAHRC PPI Team – Kate Boddy, Kristin Liabo, Helen Burchmore, Emma Cockcroft and Tanya Hynd, led by Professor Nicky Britten.
- Members of PenPIG (Peninsula Public Involvement Group) PenCLAHRC’s service user involvement group
- The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) Family Faculty – made up of families of disabled children involved in PenCRU’s work.
We were welcomed by PenCLAHRC Director Professor Stuart Logan who set out the aims and objectives of PenCLAHRC and their partnership working with patients and the public.
After some introductions and networking we then looked at a research study early in development. Both sets of patient and public contributors provided the benefit of their experience and expertise to help shape the research.
Our thanks to Kristin and the PenCLAHRC PPI team – for making us so welcome and for all their work in making the day a success. We are planning a return visit which will see PenCLAHRC come to London in the new year.
Professor Monica Lakhanpaul, Principal Investigator on our NEON study has successfully applied for funding to develop a major research programme addressing the needs of women and children in India.
Professor Lakhanpaul (pictured below) is leading an application in respond to a call supported by a number of organisations from the UK and India (see below) under the title Global Research Programme; addressing the health needs of women and children in disadvantaged populations globally
Successful applicants will build partnerships across the UK and India to execute research that will impact the ability to prevent, diagnose and manage prevalent chronic and infectious diseases facing women and their unborn children in low-and middle-income (LMIC).
By successfully navigating the initial round of the application process (“the concept proposal”) Professor Lakhanpaul has secured a £4000 travel grant to support the development of a partnership for the full proposal development process. Her initial concept proposal was for a vitamin on vitamin B12 trial in pregnant women and children in India.
A full proposal will be made in September for the larger pot of funding.
Monica’s work with the Bangladeshi community in East London is also referenced in a recent blog Can women talking save lives? Reducing inequalities in newborn mortality in India, Nepal, Bangladesh and Malawi
Based on findings from research previously conducted by the school-based asthma project, part of our Child and Adolescent Health Theme, the team have worked with Greenwich & Lewisham Young People’s Theatre to develop a theatre production addressing asthma control. The theatre piece In Control has been performed in schools since June 2017, and was recently featured as part of the British Science Festival held in Brighton 5th – 9th September 2017.
Photo credit: Gerard Monaco
The aim of the play is to change the perception and image of asthma among young people, in order to help those with asthma feel supported and therefore better able to manage their condition. Written as a collaboration between the theatre and research teams, young people with asthma were involved to advise on the storylines and dialogue to make the play as real and as accessible as possible.
In Control follows a 15-year old girl, Jazz with asthma through a week of detention with two of her classmates. Usually confident and outgoing, Jazz hides that she has asthma and is reluctant to accept help when finding it difficult to breathe. After the play, the protagonist stays in character as the students participate in a discussion of the themes raised, facilitated by the other two actors. Engaging the school audiences through theatre gives a new angle from which to involve young people in thinking and talking about the challenges faced by those with asthma.
Dr Gioia Mosler from QMUL said: “It was an amazing experience seeing the direct emotional effect that a play can have on these school groups. We have been hugely encouraged by the initial reactions to this project and we are already starting to study how effective this kind of intervention can be to help young people deal with their asthma.”
Dr Jonathan Grigg, professor of paediatric respiratory medicine at QMUL and project lead added: “We must develop innovative ways of improving asthma outcomes in children and young people. Our work with Greenwich & Lewisham Young People’s Theatre has identified a new space where interventions can be delivered and tested outside the standard medical model.”
Photo credit: Tunde Euba
Dr Gioia Mosler, Outreach and Learning Manager for the school-based asthma project, and Tunde Euba, Arts Practitioner working with Greenwich & Lewisham Young People’s Theatre, have written about the development of In Control for The Lancet: Taking Control Through Drama
Also featured at the British Science Festival, was Asthma Dodge – a smartphone game developed in collaboration with the Centre of the Cell, a science education centre at Queen Mary University of London. In the game, the player takes the role of a young person with asthma. The aim is to run as fast as possible to reach the Centre of the Cell, dodging the asthma triggers along the way. Information about asthma is incorporated into the game, such as how asthma affects the airways, how different medication works, and the different types of triggers for asthma symptoms.
School-based Questionnaire on Asthma Control in London Secondary School Children
In a previous study from the school-based asthma project team, questionnaires completed by over 750 secondary school-aged students from schools in London revealed that only 54% of participants were managing their asthma well. Out of those whose asthma was not well controlled, almost half thought they had good asthma control. The school-based questionnaire also highlighted that students often feel uncomfortable about using an inhaler at school.