Collaborative Summer School – Addressing Health Inequality

Press Release: Collaborative Summer School – Addressing Health Inequality

Press release for a collaborative postgraduate summer school with the University of Birmingham.

Hello, my name is Alice and I’m a research scientist at Future Genetics.

I’m here to tell you about the June 2019 University of Birmingham Postgraduate summer school that is being run by the University, where Future Genetics has set a real-world challenge for students to address.

This University of Birmingham Summer School event presents an excellent opportunity for its PhD researchers to really show off their skills in ingenuity and innovation.

Throughout this week-long program participants will receive a detailed introduction into the world of business and put their skills into practice by developing a business plan to solve the real-world challenge that they are set.

There will be 10 multi-disciplinary teams comprising of 6 highly talented post-graduates within each team.

The week-long course will begin with introductions to the project and a welcome by university staff, followed by group exercises on topics such as working in an effective team. The challenge will be revealed by Future Genetics and participants will have the opportunity to tour the research facility where our scientific research takes place.

The rest of the week will consist of ‘team time’ where participants will develop their exciting and innovative business plans.

The week-long event will end where each of the teams will give presentations that describe the challenge and their innovative solution or solutions to a panel of judges including Future Genetics CEO and Medical Director, Dr Mohammed Kamran.

The judges will give verbal feedback on each of the teams and will collective agree on and announce the winning team.

For those who want to be part of the audience for this Grand Finale when the University of Birmingham’s super-bright students deliver their pitches on Friday 14th June please contact Leliana Jardim at (l.jardim.1@bham.ac.uk) for further details.

 

A bit about Future Genetics

Let’s begin with two quotes.

NHS England says:

“Health inequalities are the preventable, unfair and unjust differences in health status between groups, populations or individuals that arise from the unequal distribution of social, environmental and economic conditions within societies, which determine the risk of people getting ill, their ability to prevent sickness, or opportunities to take action and access treatment when ill health occurs.”

Health Scotland says:

“Health inequalities are avoidable and go against the concept of social justice”

In the UK there is significant health inequality and genetic disparity

In the absence of meaningful action, The UK will continue to head deeper into having a divided society where people fall into groups of ‘haves’ and ‘have nots’. Future Genetics is on a mission to help empower people to bring measurable improvements leading to better equality.

Future Genetics is focused on empowering people from all backgrounds and communities to live better lives. This is addressed through meaningful medical and scientific education that is relevant to the breadth of the UK population, which is represented by culturally rich and diverse communities. Future Genetics is also carrying out research focused on the discovery and development of disease bio-markers in areas of unmet clinical need that can be used to help direct doctors to use a medicine that is best suited to patient based on their genetic profile.

Future Genetics is excited to collaborate with the university on this project as we hope to further our mission of empowering people to take charge of their own health and inspire the PhD candidates taking part, no matter their specialisation to pursue this field of work.

We as a society need a healthcare system that is able to provide the best and most appropriate treatments to different patients, and where individuals and families are sufficiently empowered to make lifestyle decisions based on their personal genetic make-up.

Future genetics is committed to developing practical ways that help society live better and healthier lives.

The Summer School Project Challenge:

 

“Help future genetics make a meaningful difference to society by addressing Health inequality and genetic disparity in the UK. Design an innovative and creative enterprise solution that generates a higher level of participation of ethnic minorities and elderly populations in clinical research.

Health inequalities and licensed medicines.

An important thing to know is how medicines are brought to market. Medicines are produced to treat people with given illnesses.

Clinical trials are carried out to test the efficacy and safety of a medicine. The “Phase 3 clinical trials” usually form the core evidence for European (EMEA) and British (MHRA) regulatory authorities who decide on whether to licence the medicine for use in the general public.

Once a medicine is licensed it can be given to a patient for the relevant illness.

 

What’s the problem?

The overwhelmingly vast majority of medicines that have been granted a license for use in the UK have been tested for their efficacy and safety in a clinical trial population that is not representative of the UK population. In nearly all cases, ethnic minorities account for 0-5% of the drug registration clinical trial population. This low representation effectively means that there is NO statistically significant evidence to support whether licensed medicine will be effective in ethnic minorities.

Often elderly people or those with additional illnesses to those being tested (comorbidities) are either unrepresented or excluded from taking part in drug registration clinical trials, so again the effectiveness and safety of the licensed medicines in those groups is unknown.

In order to compensate for this there is a safety net system – the yellow card scheme- that is designed to identify issues around lack of effectiveness and safety.

For more information on the yellow card scheme visit www.yellowcard.mhra.gov.uk

The reality is that there is a significant issue with under reporting of adverse events- these are when a medicine produces side effects that were unexpected for example it may fail to work or the patient becomes unexpectedly ill).

Estimates in the UK suggest that around 5% of adverse effects are reported to the regulator. The situation in Europe is even worse where it’s estimated that only 1% of all adverse events are reported. As a consequence, the current system cannot quickly identify drugs that are ineffective or unsafe.

A well-established example is of a blood pressure medicine that was tested for efficacy and safety in a predominantly Caucasian population before being licensed. In the real-world population when the medicine was given at the licensed dose to black patients their blood pressure was not controlled and instead continued to worsen. This raises ethical concerns of under representation of ethnic minorities in drug registration clinical trials.

The reality is that the system is awash with medicines that have not been adequately tested in populations and communities that represent the UK.

Ethnic minorities have a notably poorer health outcome than the general population. The prescription of ineffective and unsafe medicines is a contributor to this health inequality.

Genetic disparity and “next generation” medicines

 

We are now entering a new era of personalised medicine. Drugs based on personalised medicine will invariably rely on the available genomic databases. The issue is that ethnic minorities re currently grossly under-represented in these databases, so it’s unclear whether those patients will benefit from genetics-based medicines.