Patient and Public Involvement and Engagement Awards

Awarded to Michelle Lowe for £2,000 as part of the new projects call. Also under the genomic medicine theme.

Some Black and Asian women do not readily access maternity care and so may face worse maternal outcomes. Women from these groups are also often not included in research studies. This means that we know little about their experiences of maternity care – especially their feelings towards genetic testing during pregnancy. Better understanding the needs that might be unique to these communities could prevent racial inequalities in maternal care and improve outcomes. By working together with parents from these communities, this work will guide future research on maternity care, including a project looking at the experiences of Black and Asian parents who are offered genetic testing in pregnancy. In the study described here Black and Asian parents will be asked to join a discussion group where they will watch a video about prenatal sequencing (a genetic test offered in pregnancy) before sharing their views on this test with the group. They will also be asked for their views on a future research project, and their thoughts on what might encourage or put people off taking part in genetic research studies. Working together will make sure that the future project reflects the needs of these communities and sharing the results from these sessions will help researchers understand the issues that are important when planning studies with people from these backgrounds. Parents will also be sent a summary of the results and will be invited to an online event showcasing these results where they can see the role their input had in the research. Importantly, this work will help researchers build relationships with parents from Black and Asian communities and let them know about organisations like Antenatal Results and Choices (ARC) who support all parents making decisions about testing during pregnancy but who might be less well known to these groups.

Awarded to Natasha Schoeler for £1,988 as part of the new projects call. Also under the Applied Child Health Informatics theme.

Ketogenic diets are low-fat, high-carbohydrate diets used as a treatment for children with epilepsy who continue to have seizures (‘fits’) despite trying anti-seizure medicines. These diets have been shown to be effective in high-quality studies. However, there are still some questions that remain unanswered, such as ‘are there any rare side effects from following a ketogenic diet?’ or ‘can people continue to benefit from ketogenic diets even after they stop the diet?’. As the number of children with epilepsy who are following a ketogenic diet within each specialist centre, or even within each country, is small, these questions are best answered by combining information from lots of different places.

An international database is being set up at UCL GOSH ICH to collect information on people with epilepsy referred to start a ketogenic diet. This information will be entered by healthcare professionals that are part of the ketogenic team in each centre, and they will include basic details, such as age and gender, details about their epilepsy and ketogenic diet, and whether they experienced any positive or negative changes from following the diet.

We would also like to collect information from patients with epilepsy who have been referred for a ketogenic diet, or from their parents or carers. We would like to speak to these individuals about whether they would be happy to enter information into such a database and, if so, what information they would be happy to share and how often.

Awarded to Fan lek Cheng for £2,000 as part of the new projects call.

Two-thirds of the medicines available in Europe do not have good studies to show they are suitable for children and how they should be used for children. Clinicians must use these medicines for children based on the data collected from adults. However, children are not small adults. As a result, their bodies handle drugs very differently. There needs to be the right ways to deliver the right doses (amounts of medicine) to different ages, from babies to adolescents. A good example of this is when giving a new-born baby a medicine when it is only available in a tablet form – what dose we should we be using, and how?

The Children’s Medicines Centre (CMC) is being set up to improve the health of children through research and training to address these issues. By studying the data collected during the care of patients, the correct amount of medicine can be studied to make the medicines safer and work better. New technologies, such as 3-D printing, may help children to take medicines by mouth and enable them to take more control of their own health.

By running educational events and research engagement events that seek young people’s opinion, the CMC wishes to work together with children, ensuring that we are doing the research right, and doing only what is needed. We want to use these events to engage with the young people, whom we are doing research for, giving them the power and opportunity to influence researchers whilst keeping them informed of how their data is being used. In return, these research engagement events will provide useful information that may help them begin to shape their careers in science and medicine. The feedback from these all these activities will form the values of CMC and inform our future PPIE work.