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/

 

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Voice of the child?!

Today I had the privilege of examining a PhD student on her research project that explored the potential to involve children in medicines R&D. This is a topic close to my heart as I really feel that children should have a voice in the development of medicines as well as their testing to ensure they meet the needs of those children who have to take the medicine. Research projects that tackle these issues are really important to highlight the role that children can play. Giving children a voice is one of the most powerful things that we can do.

I have been asked to talk at the Royal Pharmaceutical Society at an event about women in leadership. This is a subject that I don’t usually talk about and it is something that has given me cause for concern – what can I say about women in leadership what voice do I want to channel…? In my research I decided to ask my female friends for advice on what to say and what they would want to hear. So far the responses have been varied – I have enjoyed the discussions as the viewpoints are so diverse. However, this time my research has been much more enjoyable that other topics – I have been introduced to some great online resources and “The Guilty Feminist” is my new favourite podcast. http://guiltyfeminist.com/

One of the things I have learnt is that I have a voice and I can use this voice to not only speak for children but also for women – it is time that I used it.

I need to get involved and really support and champion women in pharmaceutical science. I wrote a short promotional piece for the talk at the RPS and I highlighted that although we have approximately 70% females on our undergraduate courses the proportion of women in senior roles in pharmacy is only 20%. I want to set a challenge to my audience that we all identify how we can support and champion women to make a change. I hope that I can reach out to men as well as women as it needs the support of all pharmaceutical scientists to ensure that we have an equal workplace.

I now need to seek out how we do this – will it be by mentoring, activism or do we need to take a more disruptive route – I will have to wait and see what the audience think!

 

Young people engaged in research

I received good news this week 🙂

I have recently run a research project looking at the age at which young people take responsibility for their own healthcare. We collaborated with a local school on this project and the student, who was in sixth form, became a member of our research team.

Projects like this are really exciting as young people get a real experience of research. And now for the good news…..

The research study was submitted as a conference abstract for the Royal College of Paediatrics and Child Health – the leading medical event in the UK for paediatricians – and the project has been selected to be presented at the event.

I am so excited for me, the student and his school – this is a real achievement

Making a difference

I recently published an article where we looked at strategies parents use to make administration of foul tasting medicines better for their children. We were looking at a specific medicine (flucloxacillin) in children with Cystic Fibrosis.

We gathered our data by asked 250 parents what they do to try to get a full picture and then share this with other parents, doctors, nurses and pharmacists to help other patients and their families. This was a piece of research that I really enjoyed undertaking and writing.

Over the Christmas holiday I was contacted by a parent who wanted to know more as he was struggling to administer this medicine to his child. This made me feel both sad and happy. Sad because many parents go through this daily struggle to administer medicines to their children and happy because I was able to provide some evidence based advice and to reassure him that he is not alone. It is really important that we all do more to help the end user and really make a difference. My new year’s resolution was to try to develop a better tasting version of this medicine so that in future there is another option which would really make me happy!

1960s clinical trial conducted in a school

One of the stories in the news today is about a clinical trial involving a new drug that was conducted in a school without informed consent of participants or their parents.

According to the BBC web pages it was on an anticonvulsant, which has sedative effects and was prescribed for epilepsy, is no longer widely in use. It was to be a “double blind” trial, with a control group given a placebo, and another group given the drug. The drug would be administered to disruptive pupils aged 15 and older.  According to the news source, the trial went ahead in 1968, with boys given the drug for six months. There is no record of the outcome in the documents, nor was any published paper in medical journals found.

It is this type of story which damages the reputation of many involved in clinical research; the lack of transparency and then the lack of reporting the outcome. It is really important to highlight this type of story but more important is the ability of researchers now to respond and highlight how much times have changed and to use this information to promote clinical research. I am awaiting the responses from the experts…..

Engaging young children in scientific research

Another publication has caught my eye specifically titled, “Back to school: challenges and rewards of engaging young children in scientific research” Published in Archives of Disease in Childhood September 2016; Vol. 101, No. 9 and written by Janet Stocks and Sooky Lum.

This publication describes strategies to engage with children with a focus on working with schools. This approach has always been useful as children are typically willing to learn and enjoy having guest “teachers” within the school environment. However, one of the biggest challenges I find is overcoming the local rules and regulations for each school to get there in the first place. It is important to recognise that the school has to engage and there is inevitably some burden passed to the school to administer aspects of the study and liaise with parents so I understand why this can be a challenge. The use of interactive science workshops is usually a great way to recruit children but it is important to remember that the children should be a representative group; sometimes those that attend these workshops are not representative of the whole paediatric community…

I still feel that more work needs to be undertaken to engage parents and children not only as participants in research but also as leaders and designers of research studies to ensure that we are investing effort and resources into the aspects that matter most to children and their families.

 

Research and Us: Infants’ Children’s and Young People’s child health research charter

The Royal College of Paediatrics and Child Health (UK) have introduced a charter that includes principles for working with and involving children and young people in research. It was introduced in April 2016 so I know I am a bit late in updating on this but the last few months have been super-busy. However, although I am late in reporting why has it taken until 2016 to introduce this charter?!

This work came about as a result of the Turning the tide report which highlighted that there not only needs to be more opportunities for paediatricians to get involved in research but also to improve public perceptions of clinical research that involves children.

Many paediatricians are already actively engaging with children, young people and their families to ensure clinical research is right for the patient. However, this was not being appropriately captured and perhaps not implemented across the board. The introduction of the charter makes this activity transparent and clearly the expectation. The other real positive is that it allows families to get actively involved in research which is always a bonus. The next challenge is to be proactive and let families know that they can influence research so they should be submitting any ideas or improvements to the right people to implement the change. That may take another stretch of time…..