University promotion of my research

I was really pleased to find a University of Birmingham leaflet in my post yesterday, particularly as it had a short piece on my research.

It included a link to this website.

On the webpages you can see poems that are read by children expressing how they feel about taking medicines on a regular basis. These poems are powerful as they allow children to express themselves in their own language to tell their story. The use of poetry can be a great tool for patients to put their feelings and experiences into their own words.

Poem 1: It makes me feel blue

Poem 2: You ask me why I say No

Poem 3: Medicine medicine

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EuPFI 2017

Last week I attended the European Paediatric Formulation Initiative annual conference in Warsaw.

This is always a great meeting full of people working hard to ensure that age-appropriate medicines are available to children. Particular highlights from the meeting included:

An inspirational talk by Catherine Litalien about the specific needs in Canada (http://gpfccanada.com/)- she also shared a video that certainly makes the point in a very emotive way.

I was also inspired by a talk that brought the technology from food sciences (via PepsiCo) into medicines to look at novel ways to mask the taste of medicines.

Another highlight was hearing the story of the development of a new formulation of hydrocortisone to provide parents/carers and most importantly children with an easier way to take their medicines. Martin Whitaker told the story of Infacort(R) and the plans for this to be available for children and families very soon.

Some of my own work was shared via my research students. Justyna Czarnocka gave an excellent presentation on measuring the mouthfeel of films using tribology to optimise new formulations for children. Cameron Watson won a poster prize for his work describing how parents currently administer hydrocortisone to their children and the accuracy of the dosing.

 

RCPCH & us….

Last week I attended the Royal College of Paediatrics and Child Health annual conference. This forum brings together researchers passionate about the health of children.

I was particularly inspired by the young people from TRANSform talking about issues in transgender teenagers and providing a voice – all very powerful.

There were whole sessions planned by young people and this should become the norm going forwards

http://www.rcpch.ac.uk/improving-child-health/us-voice-children-young-people-and-families/us-voice-children-young-people-an

 

Young people having a powerful voice?

This week I have been inspired by Liv Jones. Liv is a teenage pupil at a school where they are about to move to a new building. The teachers were asked to suggest inspirational people as the names for the new rooms. Liv noticed that there were very few women on the lists and so asked if they could look to have half the rooms named after inspirational women to reflect the gender balance of the pupils. The school have refused. This is where Liv could have given up… But no she continued with her campaign. She used Twitter to attract attention and even appeared on the Guilty Feminist podcast to talk about her campaign. I love this story – obviously the message she sends is one I wholeheartedly agree with – but her dedication to her campaign and her maturity is what is most admirable. She has not just gone quietly away to grumble to her peers, she has risen to the challenge to continue her campaign and to to empower other people (young and old) to stand up for their beliefs and to make things happen. She really has got a powerful voice.

If you want to sign her campaign here is the link: https://www.change.org/p/rooms-of-our-own-equal-gender-representation-in-school?source_location=minibar

Assessing acceptability of medicines..

New regulations have stated that it is important to assess the acceptability of medicines designed for children but it is really difficult to know which methods to use.

I am celebrating the publication of a review article on this topic:

Methodology Used to Assess Acceptability of Oral Pediatric Medicines: A Systematic Literature Search and Narrative Review

This study looked at the range of methods used to see which are of use – hedonic scales are often used and seem to be the most appropriate but it is important that the faces match the responses from a child. Often pain scales include children crying and we very much hope that the taste of a medicine does not result in tears. There are also some cultural considerations as some scales have faces winking or sticking out the tongue which can have very different meanings for children (and adults) globally.

Image result for hedonic scale

Image result for faces scale

There are also studies that used gender specific scales but this seems to add to the confusion…

It is important to review all the information to make sure that data collected is of value

Recycling medicines for children

Repurposing medicines is a fashionable term that is used to describe using existing medicines in new ways. This is interesting for children as often clinical studies are conducted in adults and a medicine is then used in children without the same level of evidence to support it’s use. This leave children at risk to unexpected side effects or incorrect dosing. New interest in repurposing has attracted new funding and now there are incentives to develop age-appropriate medicines for children – this can only make the clinical picture better for children going forwards.

It is time to take action and make sure that children have access to the medicines they need in a form that they can take. There are new funding streams to support this work and it is important to work collaboratively to achieve our goals.

http://www.findacure.org.uk/open-call/

 

findacure presentation

I have been invited to give a presentation on pre-clinical drug development to an audience of patient groups. This is a real challenge for me as I know a lot about pre-clinical drug development and teach this to undergraduate and post-graduate students at the University of Birmingham. However, this audience is unique, I don’t know their background knowledge so I am not sure how much to say – the presentation is a webinar so I can’t see their faces to see if my approach is at the right level. How will I know if I have given them the information they wanted…. Finally, University students’ motivation is always linked to assessment – this audience will not be assessed on their understanding!! Although they are relieved about this I still need to understand their motivation to take the time to listen and feel enormous responsibility to deliver an interesting talk…

I have worked with patient groups previously; they are representatives who are often eager to learn more about a condition that affects them or a family member. The main purpose of my talk is to explain pre-clinical research in a simple way to make sure that I introduce the language used within this area of research to enable patient groups to have meaningful conversations with researchers and funders working in this area. Patient groups can be involved in prioritisation exercises to determine where funding should be directed – it is critical that they understand the impact of that funding on the outcomes for the patient group – even when these outcomes may not have an immediate and direct effect on those living with a condition.

 

The event is on the 11th April and I have already planned the presentation – I now need to road test and fine-tune it – wish me luck

http://www.findacure.org.uk/webinars/