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…..

Helping to understand health research

Today I read about the launch of a new website that aims to help the public to understand health research.

The site Understanding Health Research: A tool for making sense of health studies has been developed by Glasgow University and supported by the MRC (Medicines Research Council). I love the idea and wanted to see how well it works……

It basically uses an algorithm to justify whether the paper is good or bad based on where it was conducted – Universities are good, pharmaceutical industry is not so good (more about this later on…) There is also a space for who funded it – again research councils are good; pharmaceutical industry is not so good….

It then goes on to ask the public user, “Are there clear research questions or aims?” there is extra reading that you can do to help know whether this is true but at this point the member of the public needs to have read the paper and really understood the content – if they have understood this then they are likely to also know about the quality of the work. The list of questions goes on (and on) – in my opinion this is a great idea – likely to be used by students when conducting a critical review but much less likely to be used by the public which is a shame. However, I would love to be disproved…

So now I will return to the question about research conducted within pharmaceutical industry compared to that conducted in Universities. I have worked in both places and I know that the quality of scientists is equal across both places of work. At a University a member of staff is measured on how many papers they publish so there is an incentive to publish as much as possible. Within pharmaceutical industry there is no incentive to publish – in fact – quite the opposite! The pharmaceutical company is trying to protect its ideas to maintain a competitive advantage over others therefore it is difficult to persuade the lawyers to let you publish anything in you work at one of the large pharmaceutical companies. So if you are to assess the quality – the one who has to publish as much as possible or the one who has worked hard to get something published for little personal gain…. I will leave it for you to decide which you think is more likely to be the quality paper

Engaging science

This week I attended a Pint of Science event in Birmingham titled “Perils of Youth” which was brilliant. Sometimes I am nervous of this type of event as it is really difficult to pitch a scientific talk to lay audience without it being too dumbed down or over the heads. Thankfully both speakers were spot on!

The first speaker was Jackie Blissett from the University of Birmingham who spoke about, “What makes people fussy eaters?” This was fascinating for me as I am often looking at what flavours of medicines are likely to be acceptable to children and to understand why there are different preferences. Recently we also did a study to better understand what children think of multiparticulates as a medicine, the children did not rate their liking of this product very highly although they were able to take it with minimal complaints. Jackie highlighted that it often takes 7-15 exposures to a new food for a child to accept it – for our study that means that our result is easily explained and that over time the child is more likely to accept it. She also talked about the environment to make sure that the child feels comfortable when trying new foods to maximise the chance of them trying the food. Fussy eating is really common in childhood and we were also informed that the ages of 2-6 years are the most difficult for the introduction of new foods – this is also of great interest when introducing novel medicines.

Her talk gave me lots of great ideas as to how best to introduce medicines for children that are likely to be acceptable.

The second speaker was Stephen Wood, also from the University of Birmingham and the title of his talk was, “Why are young people fighting mental illness?”. This was another great talk that highlighted the onset of mental illness being common at the time when paediatric services meet adult services and there is a big gap in the care. This is a real frustration as this is the time when these individuals need the most care. He encouraged the audience to reach out and do what they can to try to fix this issue which was really powerful.

I would encourage anyone to attend this type of event and I will certainly be looking to go again next year

Barriers to hearing the voice of children in research

So my mission is to involve children in research – not as subjects but as collaborators to ensure we listen to their voice – here I really mean listen to and not just hear.

I was pleased to see an article recently titled, “Back to school: challenges and rewards of engaging young children in scientific research”. Arch Dis Child doi:10.1136/archdischild-2015-310347.

This article clearly expresses the need to engage with children but states that, “Unfortunately doctors’ reluctance about their patients’ participation in research, whether on the grounds of lack of equipoise or the additional workload that this may entail, remains one of the major barriers to research” This is such a sad statement that doctors are seen as a barrier to their patients’ wellbeing and it is one I know is not true on a day to day basis. However, it is true that engaging in research is time-consuming and time is the biggest barrier not the merits of engaging with children.

There are many hurdles to research and working with children add to these – however the benefits far outweigh those barriers. The enthusiasm with which children can engage in research and the new insights they bring is a joy to any researcher and their energy is contagious.