We are looking for new members of our TwinsUK Volunteer Advisory Panel (VAP) and eVAP, to replace our outgoing panel.
The VAP meet twice a year, either in person or by video call, and the eVAP provide input by email only.
To apply to be a member, please complete the short online application below by Monday 7th March 2022 (extended from 14th February 2022).
What are the VAP and eVAP?
The VAP and eVAP provide feedback on new research protocols, pilot our questionnaires, review newsletters and participant information materials, discuss ethical issues, and provide advice on a variety of topics.
We set up the VAP and eVAP in 2009 to ensure that we take the opinions and views of our volunteers on board during the development and running of research programmes at TwinsUK.
Membership lasts for three years.
The panel consists of:
12 VAP members who meet twice a year, either in person at St Thomas’ Hospital, London, or over video call. We also email VAP members approximately 4-6 times a year for their views.
12 eVAP members who are consulted by email only (approximately 4-6 times a year).
How do I apply?
There are no qualifications needed and everyone can apply, although only one twin in a pair can be on the panel at any one time – so please discuss with your twin before you volunteer! We also ask that you do not apply if you have previously been a VAP or eVAP member.
Both panels will be selected to represent the diversity of TwinsUK in terms of zygosity, age and gender of the twins.
If you would like to apply to become a member of the VAP or the eVAP, please click on the link below to complete the short form by Monday 14th February 2022. We will email you the outcome of your application by within a month of the closing date.
Apply to join today
To apply, click on the link below and fill out the short form:
If you have any questions, please do get in touch with the Chair of the VAP, Paz García, on paz.garcia@kcl.ac.uk.
Feedback from 2018-2021 VAP members
“I’ll really miss being part of VAP. Throughout my time in lockdown, it really gave me a sense of purpose and a feeling that I was part of a team making a valuable contribution in the fight against Covid. The VAP enabled me to contribute some diverse and commercial risk management skills in a very different environment. Our VAP formed a great team where everyone was listened to and their views were respected.”
“I was wary that the level of scientific explanations might be beyond me at times but I always felt that things were pitched in an appropriate way for us…. so don’t let people be put off by this.”
“I am very grateful to you all at the DTR for making my three years as part of the panel such an enjoyable and worthwhile experience. It has been especially good to have been able to contribute to your vital work during the pandemic which was such a pressured time for you all. Thank you so much.”
Night falls across the creeping Thames, glass glitters under the clouded sky, a sliver of the moon breaks through, and stirring autumnal wind crosses the glimmering edifice of St Thomas’ Hospital. Approaching winter seems to hang in the air as shadows lengthen in the evening light. These shadows climb the walls of the hospital.
Some windows are lit, some are not. If ghosts walk the halls, Agnes Elizabeth Jones nods to Florence Nightingale, and William Cheselden wonders how much mercury Isaac Newton ingested.
In the Twin Research clinic, samples of all kinds have been collected. This includes around 300,000 aliquots of blood, stored as serum and plasma. From finger-prick bloods to phlebotomy blood draws, a prowling vampire would be fascinated. Blood and guts are the source from which discoveries spring.
Through corridors, through laboratories under fluorescent light, the penumbral night seeps. Every catalogue of Halloween costumes tends to include nurse’s scrubs – hospitals can be spooky, can be cinematic. So can twins—the unheimlich, or the uncanny, plays on the material of life. I’m reminded of Michael in Caryl Churchill’s play ‘A Number’ pointing out: ‘We’ve got thirty percent the same [DNA] as a lettuce. Does that cheer you up at all? What I love about the lettuce. It makes me feel I belong.’
The trees along the river quiver down below. Curtains flutter in the breeze, woodsmoke drifts from distant bonfires. Beyond the clinic windows, clouds swirl in the sky like a witch’s cauldron.
From the clinic and labs of TwinsUK: Happy Halloween!
Nearly 2.4 percent of babies are now born as twins, the highest of any point in history. In the UK this means that, on average, there is now at least one pair of twins per year group at school.
In some places this rate is much higher. For the past several years, the number of twins starting school in Inverclyde, Scotland, has been in the double digits, leading to the nickname ‘Twinverclyde’. There are now over two hundred twins attending the first seven years of school, and there are no signs of slowing down — this year thirty twins, or fifteen pairs, are starting school for the first time in Inverclyde. It is unknown why this area continues to have such a high density of twins, year after year.
Twins entering school or returning to
school face one of two scenarios: they are in class together or in different
classes. Sometimes they may even be enrolled in different schools.
Schools have different policies around twins going into the same classes. I remember in school rarely seeing both twins of a pair in class, and often I would only see them together at lunch or after school. Many times we would not realise classmates were twins until we saw them together.
If my classmates were identical twins, there would be tall tales of switching classes and estimating how long it would take teachers to notice. I recall three separate occasions of people assuming twins in different classes were one person and confusion when they did not recall events that had happened to their co-twin.
Some schools push strongly for twins to be separated from each other, while other schools are small and only have one class per year so there is no option for twins to be separated.
A 2018 study from Goldsmiths, University of London found ‘almost no sizeable positive or negative average effect of classroom separation’. This study indicates that schools’ push for twins to be separated is not backed by evidence of any benefit, but seems to be a net neutral.
Research suggests that 80% of schools in the UK give parents the choice of whether to keep twins together while 20% do not consult with parents and have strict policies. Individual family circumstances differ however, and schools maintaining one blanket policy may be less helpful than families making their own decisions.
In some cases, it may be better for twins to be kept together, especially if they have spent much of their lives in close contact with each other and it would be distressing for them to be separated. In other instances, it may be better for a pair of twins in school to be separated to avoid interpersonal conflict or encourage making connections with others.
Starting the school year is a unique experience for twins due to their relationship and bond with each other. Whether it brings out competitiveness or requires navigating new group dynamics, it brings new challenges and new experiences.
During the first UK lockdown in March 2020, two nurses and four research practitioners planned their days with military precision. They were under immense time pressure, for if they did not return in time, they would lose their window of opportunity. They had to receive special dispensation to drive across the country. With difficulty, they had managed to obtain PPE from a handful of suppliers and the NHS.
Their mission? Groundbreaking research on COVID-19, detectability, antibodies and immune response with six hundred twins.
New rules of engagement
TwinsUK, operating from the Department of Twin Research at King’s College London, was short-staffed during the first lockdown because some clinic team staff members were deployed elsewhere in St Thomas’ Hospital where they were needed more urgently.
“How would we do it? Would the twins be comfortable with us visiting them in their own environment?” asked Clinical Operations Manager Alyce Sheedy, of the daunting task.
It was both a mathematical puzzle and a tactical operation. Between the first blood draw and returning to the lab, there were only six hours before the samples would lose viability.
In an 85-mile radius from St Thomas’ Hospital, from Southampton to Suffolk to Northampton to Kent Downs, the team were seeing an average of 26 twins each day. They accomplished this by hiring three cars and travelling in pairs. The team went to the most distant household of the day first and then continued to homes closer to the hospital.
Each pair of practitioners averaged eight home visits per day, driving throughout London and the south of England every day. In six weeks they reached over 500 twins for the first antibody study.
The twins they visited were either asymptomatic or had previously reported symptoms and had completed their isolation period. The team did nose and throat swabs to test for COVID infection. The initial antibody study took blood for antibody and T-cell testing, stool to see if the virus was detectable in stool and long-term viral shedders, and they took urine and saliva samples. Twins who tested positive for antibodies were visited again 6-8 weeks later, as was their co-twin.
250 of the initial 512 were visited again, and 52 twins were seen for T-cell blood tests, some which were repeat visits, and others who were being visited for the first time. 32 of the T-cell group were seen yet another time, and in April of 2021, 150 of the original 512 were seen again.
Alyce Sheedy draws a blood sample from a TwinsUK member during a home visit
Working from home
Before the lockdown the twins participating in TwinsUK’s longitudinal cohort study had been coming in to St Thomas’ for medical examination and collection of samples, so the twins and practitioners were used to seeing each other in that context, but the home visits were different.
“Being used to seeing twins in clinic environment, it was nice to see them in their own environment – it added another dimension to everything,” Alyce Sheedy observed.
The twins were welcoming, excited to be a part of the research and to join in the collective effort of investigating and battling COVID 19. They offered snacks and drinks and bathroom usage, which was especially important during the first lockdown when businesses were closed, and toilets were far and few between. The nurses and research practitioners were able to answer questions the twins had and ‘reassure and alleviate fears, which was a good feeling’, Alyce Sheedy recalled.
For some twins, the nurses and research practitioners were the only physical contact from outside that they had during lockdown, so it allowed for some company in person.
Sheedy described a moment on a return visit in August of 2020 when a twin was having a cul-de-sac neighbourhood party, and as the visiting team left, kitted out in PPE, applause erupted across the neighbourhood.
“It really showed that the twins were really appreciative of all the work we were doing on the COVID frontline.”
The global improvement to tap water quality worldwide has been a public health success, with access to clean water for drinking, food preparation and cleaning being essential for health.
It’s understood that where there are contamination events – for
example, pollutants entering water bodies that feed into tap water treatment
works – drinking water can affect human health. How badly this might affect an
individual might in part be due to their microbiome.
Microbiome and health
Whilst diet is frequently researched, drinking water, and its ability to alter gut bacteria, has been surprisingly overlooked. So that’s what we set out to do.
We asked 90 of our amazing twins who have lived in the same house since they donated their microbiome samples to supply a much easier to acquire sample – tap water! We then looked for any associations between the tap water and the microbiota.
Because drinking water in the UK is extremely regulated, we were not looking to see if there was a health effect of the water. Unless there are very old pipes, it is not only safe to drink but indeed essential to drink tap water regularly.
What we found instead was that molecules that are commonly found in water (for example, minerals that are dissolved in the water), but differ from tap to tap and region to region, did associate with microbiome composition.
This was a small, preliminary study, and further work and experiments are needed to confirm our findings, but it does suggest that tap water could influence the microbiome.
This means that where there is a contamination event, one of the ways it might harm us is via the microbiome, and that in areas where this happens frequently, treatments targeted at the microbiome it might be one way of lessening its impact.
Thank you to our twins
We’d really like to thank the twins who participated in this project, who were extremely patient, engaged and a joy to speak to for the questionnaire part of the data collection. Every project is a constant reminder that all of the research we do would be impossible without our dedicated volunteers!
Here’s to all of the fabulous women working in research, clinic, administration, communications and much more.
An equal world is an enabled world – that’s this year’s theme for International Women’s Day, celebrated on the 8th March.
Here at the Department of Twin Research, we are proud to have so many incredible women across all roles and seniority.
In honour of #IWD2020, we asked our colleagues a couple of questions to understand why they got into a career in science and their views on the challenges that come with being a woman in science:
What inspired you to enter into a career in science?
What is your research or work area, and why are you passionate about it?
What do you think are the challenges for women in science?
What do you think would keep more women in science?
Scroll down to find out the answers of seven of our TwinsUK staff members.
Dr Caroline Le Roy, Research Associate
Since I was very little I have been fascinated by biology and how it can help to understand how things around us and within our own body work. I wanted to contribute to the development of this knowledge.
I try to understand how the microbes in our gut can impact our health and whether we could use diet to affect these effects. We have known for a long time that we all have trillions of microbes that live within our digestive system. Yet this remains a largely unmapped territory, which mean that many things need to be explored and discovered. More importantly, by helping to better understand the gut microbiome, I can help (even if a little) to make people healthier.
A challenge for women in science is to make sure that we are treated equally and given the same opportunities but also that we support each other in understanding and acting on our rights to all contribute to science equally. To believe more in ourselves is another.
Having role models who are women would keep more women in science, and supporting each other in believing that it is possible. Education at home and at school would also help.
Rachel Horsfall, Operations Coordinator – Data Linkage
I really aspired to be like my lecturers at university – I loved how they were always proving/ disproving theories and testing the limits.
I currently research the microbiome in the elderly specifically regarding dementia, and I also work on data linkage to create a more robust cohort. I really care about my job because every day is different and you know in some way that you are making a difference. I especially like days within the clinic where I get to speak to patients from all walks of life and hear their different stories.
I do think that gender bias and discrimination is still prevalent in some areas within science and this can be hard finding a work/life balance. But many of the barriers are sociological and psychological – but they are disappearing so it’s a good sign!
To keep more women in science, we need to spread the word about the achievements women make within science, creating visible role models and have mentoring.
Dr Claire Steves, Consultant Geriatrician, Senior Lecturer and Deputy Director (Clinical) of TwinsUK
I love asking questions to try to understand things more. Science is all about that.
The working of the human body is the most amazing thing, and it’s at its most complex and beautiful when it’s dealing with what time throws at it. That’s why I study human ageing, in all its diversity. I’m passionate about it because as a doctor it’s where I see most need for new solutions for all people to have as long a healthy and happy life as possible.
The challenges are really the same whatever sex you are and are all about how you balance your life. I wear six different hats – scientist/researcher, teacher, doctor, wife and mother and daughter. If I was a man I would still have six hats!
The most important thing is actually to support male scientists/ researchers in having a balanced life. Then we will all be on a level playing field and will be truly able to work to each other’s strengths, not based on gender but based on individual aptitude and drive.
Emily Leeming, PhD student and registered dietitian
I didn’t think that a career in science was necessarily on the table for me when I was a bit younger – I used to work as a chef! I always loved science at school, and I have a curious mind, so learning more about how the body works – and the impact of food on our gut microbiome – was an obvious choice for me.
My science undergraduate degree led to a masters degree in order to qualify as a registered dietitian. I realised in my masters that I really enjoyed the research elements; I’m now coming towards the end of my first year doing a PhD.
My PhD topic is looking at novel multivariate approaches to investigating the impact of food on the gut microbiota, the fecal metabolome and their interaction with metabolic risk.
There are so many challenges for women in research. There’s still gender bias and discrimination with men typically in positions of leadership, and statistics describing, for example, how there’s less collaboration with female scientists vs male scientists. The academic currency is the number and quality of papers that you publish or are involved in. As a result, there’s huge pressure for new mums to come back to work quickly, who then struggle to balance home and work. This usually happens at critical career time-points with women less likely to progress to higher positions – even tougher in an industry where there’s over saturation of scientists at the lower levels.
How to keep more women in science is a trending topic of conversation in the last few years. The problem is whether organisations and those in positions of authority are simply paying lip-service to this, or if tangible action is being taken. Structural change need to be made across academia, with support put in place for women (and LGBTQ, BAME, those with a disability…the list goes on).
It’s not only the institutions that need to lead change, there are many overt and subliminal cultural forces at play which prevent women from entering STEM in the first place or from progressing in their chosen field. There needs to be a focus on equitable opportunities rather than simply equal ones, recognising that some are at a larger disadvantage than others.
Dr Ruth Bowyer, Research Associate
I grew up wanting to live in the jungle amongst the trees, so initially trained as a conservation biologist. However, it turns out field work was not as exciting as I imagined and David Attenborough had the niche I wanted covered, but in the process I released a love of data, and how it might shed light on the poetry of how our biology is both shaped by and shapes the world around us. I moved into health research because I liked the idea that I might be able to help make the world a marginally better place.
I’m an interdisciplinary scientist, although I work a lot with ‘big data’, so I’m not sure I have one research area to be passionate about! However the thing I like is the pursuit of understanding (the more I learn, the more I realise there is to be learned!) and the opportunity to contribute in a small, small way to the betterment of society!
The obvious challenge is the difficulty of work-life balance, given the excessive working pressure, particularly for working mothers. Additionally, the ubiquitous short-term contracts can add a layer of stress if you were to decide you want to have a child, and taking time out unfortunately hinders your career in the current ‘publish or perish’ framework. I think these issues contribute towards challenges that put off not just women but anyone from a more disadvantaged background from pursuing an academic career path.
Additionally, imposter syndrome can be a big issue, and I think part of this is due to systemic differences in how men and women are perceived and are encouraged to perceive themselves. The difficulties are complicated and intersectional.
I think a wider variety of voices and ideas would be a great contribution to the research landscape, and part of that would be having the culture in place to encourage and help nurture women and other less represented voices to remain in academia and ascend to the hallowed ranks of tenure and beyond!
Philippa Wells, PhD student
It sounds cliché but I wanted to make a difference to the world by improving medical knowledge and therefore human health. That’s the aim, I’m not sure how it’ll work out!
I work on the microbiome and the things I love best about this is it’s a fast-paced area which is really on the frontline of knowledge for human health and we’re only just beginning to understand how important it is. I also like how it allows me to keep my interest quite broad without focussing on just one health condition.
I think the main challenges come higher up in the career ladder – most professors are men, but even at my stage (final year PhD), it’s definitely been a challenge to get here. I’m not sure how much of that is due to gender, but potentially it’s more difficult to be viewed as competent as a female.
I am lucky to have female role models at work, and many excellent female colleagues. I think that’s important to encourage more women to stay in research.
Colette Christiansen, PhD student
I have always been fascinated by the world of living creatures and the special abilities they have: pond-skaters can walk on water, ants’ neck joints can withstand a pressure of 5,000 times their own body weight and spiders’ webs are stronger than steel. The key to these abilities lies in their genetics so I was naturally drawn to this field.
I work on genetics and epigenetics – how genes are turned on and off – which I love because it holds the key to unravelling the mysteries of who we are, how our bodies work and the impact of our lifestyle on our health. It also combines my passion for biology with my skills which lie in maths and data analysis.
Science is similar to many professions where you need to promote yourself and your research in order to progress to more senior levels. This creates more challenges for women, who in general find it easier to collaborate but harder to self-promote. Academic science roles are even more of a challenge due to the difficulty in advancing through a career and the number of temporary contracts along the way, you have to self-promote repeatedly!
We are lucky in our department to have many female role models and these leads to a greater understanding that everyone has different challenges in their lives. Giving people the flexibility to work around these makes the working environment better for everyone.
For all the
cat lovers out there, have you ever wondered why there are female calico cats
with beautiful tortoiseshell coats, but no male calico cats? You may be
surprised to find that human females also have a mosaic pattern – we just can’t
see it.
We have 23
pairs of chromosomes which contain instructions – genes – for making what our
body needs to develop and maintain itself. One chromosome of each pair is
inherited from our mother and one from our father. One of these pairs is what
determines whether we are male or female. This sex chromosome pair has two
X chromosomes for females and one X and one Y chromosome for males.
If females
have two copies of an X chromosome, this means that they have twice the number
of copies of genes that are on the X chromosome than males do. For all other chromosome pairs having two
copies of each gene is normal and necessary and both males and females have
these. However, when it comes to the X
chromosome this is a special exception. As
can be seen from males, who are XY rather than XX, two copies of X are not
needed.
Does having
extra instructions matter though? We know from conditions like Down’s Syndrome
where people have three copies of chromosome 21 rather than two that extra
chromosomes do affect how we develop. Three copies of a larger chromosome with
more genes leads to Patau’s Syndrome which is generally fatal in the first
weeks of life. Women might not be able
to survive with two fully working X chromosomes.
As ever,
biology has an answer. When females are just a small collection of cells in the
womb, one of the X chromosomes is inactivated. This is a random process, so the
result is that around half the cells inactivate one X and the other half
inactivate the other. As these original cells go on to divide into many more
and create you, the result for females is a pattern which varies throughout.
The
instructions for fur colour in calico cats are contained in the X chromosome,
which is how some parts end up different colours from others, depending on
which X chromosome is active in which patch. If instructions for human
skin colour was also on the X chromosome, human females could also have
patterned skin.
So the next
time you admire the beautiful coat of a calico cat, make sure you admire also
the wonder that is you or the women in your life.
Every four years since 2000, identical twins Tracey and Julia make a
trip to St Thomas’ Hospital in London. But they don’t go for treatment – they
go to meet researchers who are working to make new treatments possible for
others.
Tracey and Julia are two out of more than 14,000 twins who take part in TwinsUK, a study which follows twins throughout adulthood to understand how various health conditions develop and the genetics behind them.
They signed
up to TwinsUK after a former colleague mentioned it to them, as Julia
explained:
“My sister Tracey convinced me to sign up to TwinsUK. One of Tracey’s work colleagues mentioned the study to her as she’d signed up with her twin. After reading an article in Woman’s Own magazine, we both joined TwinsUK 6 months after the initial launch.”
Julia and Tracey
Studying twins
How can we tell
whether a particular condition is due to genetics and/or our environment and
lifestyle? The answer of course is twins.
Professor Tim Spector is the Director of TwinsUK. What started as an arthritis study with a few hundred twins in 1992 turned into what we now know as TwinsUK – a long-term study of 14,000 twins.
Professor
Spector explained the reasoning behind studying twins:
“Twins are the perfect experiment. Identical twins have identical genes. Non-identical twins, or “fraternal” twins, only share half their genes with each other. We can make comparisons to work out to what extent nature or nurture cause different conditions and diseases.”
When both
twins in a pair have the same condition, researchers say they are ‘concordant’.
If only one twin in a pair has the condition and the other doesn’t, they are
‘discordant’. Researchers can then design studies which take advantage of
twins’ unique set-up.
For example,
if more identical twin pairs are concordant for a particular condition than
non-identical twins, then that condition is likely influenced to a greater
extent by genes than by the environment.
Conversely,
if identical twin pairs are discordant for a particular condition, then
researchers can investigate whether other aspects such as their environment or
lifestyle may have a stronger influence on the development of the condition.
That’s not all twins can do. TwinsUK is uniquely placed to identify the molecular systems underpinning health and development of disease. The sheer volume of data TwinsUK collects means that their twins are amongst the most studied in the world. TwinsUK holds hundreds of thousands of pieces of information. Genetics, age, weight, blood pressure, bone density, gut bacteria, blood cell counts – you name it, they have it. As if that wasn’t enough, TwinsUK now wants to ramp up data collection and explore personal, social and ambient environmental influences in more detail. This includes studying the impact of things such as physical lifestyle, pollution, pesticides and inequality.
The
researchers are not trying to answer one big question with all this data. They’re
working in a wide range of areas such as ageing, type 2 diabetes, back pain and
sensory impairment, to answer lots of different questions about health and how
conditions develop throughout the life course of an adult. All of the work brings
us closer to understanding how the human body works – in sickness and in
health.
Sharing is caring
TwinsUK
doesn’t carry out their work alone. Considering the enormous amount of data
collected, it wouldn’t be possible, and there are lots of other researchers and
specialists who want to take a closer look at the data as part of their own
research.
Dr Claire
Steves, Deputy Clinical Director for TwinsUK explained:
“It’s important that we share our data with other health researchers so that we can make the best use of it. It’s only fair to the twins – after all, it would be unethical not to get the most value out of the samples and health measures they so generously provide.”
To this end,
the TwinsUK Resource Executive Committee has approved more than 800 data
sharing requests, covering 150,000 samples shared with 100 collaborators. This
means that even years after it was collected, the twins’ data and samples
continue to be used to advance health research for everyone.
That’s not
where the sharing ends either. TwinsUK has contributed to more than 850
scientific publications as well, ensuring that the results of health research carried
out using the twins’ data and samples are made available to other researchers
around the world.
Looking
ahead, TwinsUK has ambitions to work more closely with other cohort studies,
particularly other twin studies. This will encourage more cross-cohort work,
and researchers will be able to learn from each other – which can only be a
good thing for health research.
The twin experience
Sharing data
and publishing the results of research however are the end products of a
research process that starts with the twins. Central to TwinsUK are the twin
visits, where pairs of twins come into St Thomas’ Hospital for a full day of mental
and physical health checks and tests. In addition, twins may be offered the chance
to take part in specific studies that TwinsUK is carrying out at that time.
“The visits up to St Thomas’ have been interesting and revealing. It’s great that you have the opportunity to help with research, from taking vitamin supplements, which helped with research into eye problems, to having MRI scans to check the brain,” mused Tracey.
Some of the
tests may be unusual, but that doesn’t deter Julia:
“The studies and tests are also very safe. The fact that any procedures and studies are carefully and intricately explained makes me feel relaxed about what’s going to happen. It’s always interesting and sometimes fascinating or even surprising to hear the results of the studies.”
Tracey added:
“Finding out we were tone-deaf was surprising, but answered a few questions as to why music always sounded perfect!”
The twins do
receive some health test results, but most take part to help with research,
like Julia:
“Personally, I feel honoured to be a part of TwinsUK and if the studies my twin and I take part in can help make a difference to other people’s health then that has got to be a good thing.”
Looking ahead
The TwinsUK team has no intention of slowing down. TwinsUK
wants to remain at the cutting edge of scientific cohort studies, and so the
team are looking to expand: their connections, their data collection, and most
importantly, their registry.
Whereas up
until now TwinsUK has only studied adults, they recently received permission to
recruit and study twins all the way from birth. This adds another dimension to
the research programme, and will help researchers understand how diseases
develop throughout the whole life course of a person.
Dr Deborah
Hart, Executive Director:
“We’re really excited to be opening up TwinsUK to more people. Like Tracey’s work colleague, if you’re a twin and know some twins who would be interested, do point them towards us.”
And for
anyone thinking about signing up, Tracey has a few words of encouragement:
“The staff and twins that you meet have been amazing. I can honestly say it’s been lovely taking in part with the research, and I’ve made lovely friends and memories along the way.”
–
TwinsUK is currently recruiting same-sex identical and non-identical twins over the age of 18. We will soon begin to recruit under 18s. Find out more on twinsuk.ac.uk/twinzone or call the team on 020 7188 5555.
TwinsUK
is funded by the Wellcome Trust, Medical Research Council, European Union, the
National Institute for Health Research (NIHR)-funded BioResource, Clinical
Research Facility and Biomedical Research Centre based at Guy’s and St Thomas’
NHS Foundation Trust in partnership with King’s College London.
Sixth form students Lia and Amir spent a week with TwinsUK to find out what it’s like to work in research. In this blog post, they reflect on their experience.
Lia and Amir writing their blog post
Lia’s experience
“I have gained such a great understanding and respect for every team that works within TwinsUK”
Before I came to work at TwinsUK, I had no idea of the different roles and collaborative effort it took to run a research department. I was lucky enough to learn about their current study called PREDICT which is aiming to be able to predict personalised food and food responses using data from the bacteria in your gut and blood responses. Although the study consists of participants taking part in various scientific tests, each team at the department plays a key role in maintaining and getting reliable outcomes from the study.
During the week I was keen to learn more about each part of the programme from the initial recruitment of the twins, all the way through to getting their various samples, whether it be blood, saliva, or urine, and finally analysing the data that was discovered and understanding how this data is shared within the scientific community.
I especially enjoyed seeing how DNA was
extracted from a sample of blood during my day at the laboratory, and it was
very helpful to finally be able to visualise all of the ‘practical skills’ and
scientific equipment they teach us about in textbooks at school.
Another highlight of my week was
meeting some of the twins and following them throughout their day at the clinic
and through each test.
I have gained such a great understanding and respect for every team that works within TwinsUK, whether it be the nutrition team who prepare and monitor the food to be eaten by participants or the nurses in the clinic and technicians in the lab who collect and prepare samples to be measured.
Amir’s experience
“My work experience at the Department of Twin Research was one of the highlights of my educational life”
On the morning of the first day of my work placement, I felt quite nervous and I was a bit worried about doing something wrong and embarrassing myself. When I arrived at the hospital, I got even more nervous as it was a very big and busy place and I got a bit lost. When I finally found my way and met the TwinsUK team though, I relaxed. They were nice, warm and friendly and after an introduction and greetings, they took me on a tour around the department and introduced me to key staff members.
On the first day, I worked with the recruitment team. They explained to me a lot about the first stage of the research process and how they keep in touch with the twins, how they inform them about the study and how they make and send their information packs to the twins at home.
On the second day, I worked with the laboratory team. The head of lab was a very kind and lovely lady, and she introduced me to all the staff in the lab and helped me feel like I was part of the team. During my time in the lab, I learned about what happens with the samples that are collected from the twins (e.g. blood and urine). I learnt about blood tests, DNA extractions and many other interesting things. I also saw Emma Thompson in the clinic when I was passing by there! I had a very nice day in there and learned a lot from the team.
On the third
day, I worked in the clinic. Before starting the work, I was not quite sure what
to expect but when I met the team and also the twins, it did not feel like a
workplace anymore! Everything came naturally and I enjoyed following the twins
through the day and the tests that they were doing. I learnt a lot about the
similarities of the twins, their interesting stories, the different tests that
they did throughout the day to help the research and I also tried some of the
tests by myself! The clinic team were very professional and tried to show me
that taking blood is not as difficult as it may sound like. They also shared
their experience about their previous jobs, education and the first time that
they took blood from someone (since I did ask them!).
On the fourth day, I worked with the data and nutrition team. I learnt a lot about how they keep track of the food that the twins eat on the current PREDICT study and how the results of the tests that had been done throughout the week are stored and saved safely. I found their roles very interesting as I have never thought about what exactly happens with the results of the tests.
On the last day I learnt about TwinsUK’s social media and how to translate scientific research to understandable language that the public can read and enjoy. I also learnt about the stages that it takes to publish a scientific paper.
My work experience in the Department of Twin Research was one of the highlights of my educational life and I am very grateful that I had this opportunity to work with these amazing, humble and hardworking people and learn about their roles. I would definitely recommend this work experience to students that are considering doing science-related subjects in the future because this work experience gives you a new perspective on science!
Our healthcare system faces myriad challenges in the next fifty years. We’ve been aware of our growing elderly population for many years, but so far little has been done to address the challenges this raises for the future of healthcare. Here, Dr Claire Steves lays out her vision of healthcare, and what we can do now to prevent current challenges becoming serious problems in the future.
This blog has been adapted from Claire’s speech at The King’s Fund’s Festival of Ideas event on 6th October 2017.
When asked to think about a way forward for healthcare, I think it’s first helpful to look back through the history of medicine. I like to think of medical history in three eras: the preservative, the diagnostic, and hopefully, in the future, the integrated era.
In the preservative era, alcohol was a key way of preserving water, reducing the risk of infection
The first era of medicine: preservative
The premedical “preservative” era extends back for millennia. This era represents the majority of human history when the main health threats were starvation, and infection. Strategies that humans created then have had huge implications for human health now. Most important has been the use preservatives to avoid infection, and keep food and water fresh.
Our main healthcare resources to combat infection in the preservative era were salt for preserving meat, alcohol for fruit and most importantly water (if you had a liking for fermented products, you were much less likely to die of cholera!), and sugar, which was not only a preservative but also a valuable energy source. Our ancestors who chose these foods may have had a selective advantage, but that advantage is gone today.
Perhaps driven by this need to conserve energy, as adults we appear to have an increasing tendency to move as little as possible. As a mother of three boys, I’m intrigued that children have such an insatiable desire to move, and yet this seems to disappear as we age; with adult humans choosing energy conservation and sedentary lives.
Could it be that this preventative medicine and tendency to over eat and conserve energy means that we are programmed to prefer things that are no longer beneficial?
So, healthcare in the premedical, preservative era was preventative, practiced in the home by housewives and mothers. In industrial times, city planners became important, introducing water systems which improved sanitation. Then followed widespread use of antibiotics, the magic bullet of the 20th century. These two revolutions have contributed to the increase in our lifespan over the last 100 years.
“…over indulgence and a preference for moving as little as possible have impacts for healthcare”
But all medicine has side effects. The preservative era has left us with hangovers which we are still feeling today; over indulgence and a preference for moving as little as possible have impacts for healthcare. Emerging evidence that antibiotics have changed the microbes in our guts, with effects on a wide range of chronic conditions, suggests that even our medicines can leave us with new problems. These hangovers have particular relevance now that we are living much longer, and evidence suggests that these fractors are driving unhealthy ageing.
The second era of medicine: diagnostic
The healthcare service we have today has been built on the second era of medicine. I call this the era of the “unifying diagnosis”. This has been an era where we have honed the classification, diagnosis and treatment of specific diseases.
The massive advances in medicine have targeted single diseases or conditions and have been hugely successful in preventing and treating these diseases. The hospital has, for the most part been the central hub, and scientists, doctors and nurses have put the medicine into practice and the more specialised and focused the better.
These two eras of medicine – the preservative and the unifying diagnosis – have led to an increase in life expectancy, which has rocketed especially in the last 150 years. The slightly less good news, however, is that the average man now spends 16 years at the end of his life with functional limitation, and the average woman 19 years!
This means that sort of medicine costing the most, and with the biggest burden within our services has now changed. The main users of healthcare have also changed. The biggest burden of ill health is now shouldered by the oldest among us, and these people are not well served by the “unifying diagnotic” model.
“The biggest burden of ill health is now shouldered by the oldest among us, and these people are not well served by the [current] medical model”
The unsolved problem we are now facing has been called many names, most of them problematic: frailty, multimorbidity, Geriatric Giants. One thing is for sure, it’s no longer about ‘diagnosed cases’ and ‘controls’, but more about sliding scales with age. I particularly like the word “homeostenosis”.
Many of us are familiar with homeostasis – the ability to keep things in balance. Homeostenosis on the other hand is gradual reduction in the ability to keep things in balance, to the point where equilibrium is disturbed and the ability to function is lost. This process happens on multiple levels – physiologically, psychologically and socially.
So has the success of the unifying-diagnostic model of medicine, of diagnosis and treatment of specific diseases, revealed the problem that was laid down in the preservative pre-medical era? It seems that the institutions built during the diagnostic era don’t seem to be providing solutions which work. We need to ask ourselves: is our health service built to help people with multiple needs on multiple levels? This is what we need to focus on to reverse the side effects of our medical history.
“…is our health service built to help people with multiple needs on multiple levels?”
We need to restructure our medical thinking, and move our services away from the “unifying diagnosis” and centralised healthcare. We also need to counter those things that are driving the phenomenon of frailty: caloric over indulgence, a preference for moving as little as possible, and, probably, excessive antibiotic use. We must aim our research at understanding and avoiding homeostenosis.
Immediate challenges
In my view, we have three key challenges to overcome in the near future to ensure that healthcare meets the demands of the future:
We need to change how we research the ageing process
A great deal has been invested in studying ageing using animal models, with the worm C. elegans, the fruit fly Drosophila, and the mouse having been put to great use in studying ageing, particularly lifespan. All three have highlighted insulin signalling pathways, and energy restriction as key to ageing. Mice have been very useful in showing the effects of physical activity. But animal models can only get us so far; they have perhaps been less helpful in studying the effects of alcohol and salt. These may be particular human problems!
Recently, there have been really exciting advances in animal research. Microbiota transplantation experiments in gnotobiotic mice, bred in sterile conditions with no gut microbes, are helping us to understand how our microbes may affect multiple physiologies simultaneously.
Despite these advances, there are two problems. Firstly, it’s not all about age, or living longer. We really should be focusing our efforts on maximising the amount of time we can live in good health, without frailty. To do this, animal models need to address the quality of ageing, not the quantity. Secondly, clinicians need to be directly involved in ageing research. Cardiology and cancer made their huge advances by ensuring that every consultant clinician had a research degree. In Geriatric Medicine (the biggest medical specialty) only 1 in 50 senior trainees have a research degree, and very few medical schools have a professor of Geriatric Medicine. This must change.
We need to encourage older adults to take part in research
It’s very difficult to engage and recruit frail older people in research. There are challenges with access to the research environment and there are risks associated with using interventions in those who are frail.
For example, I am involved in a multicentre study of two promising new treatments for sarcopenia – muscle wasting with ageing. We’re finding it almost impossible to recruit patients yet we urgently need to do the research to help translate geroscience – the study of the relationship between aging and age-related diseases – into the real world.
We need to address the social divides in ageing
There is a worrying divide where frail ageing is happening much more to the less well off. The functional difficulties associated with ageing are much more of a problem in the lowest socio-economic groups. And this is a problem that is getting worse, not better. We must ensure that any solutions we create reverse this health injustice.
All this is taking shape within a larger unsettled political landscape. Our health service and our research capability are being heavily threatened by our divorce from the European Union. This threat overshadows potential progress over the next fifty years, which we should not be shy of debating.
What are the assets at our disposal as we move to integrated healthcare?
If there is a poly pill, we already know what it is. There is already one clear key to health happiness and resilience: physical activity. But how do we get the whole population moving and remove our addiction to the combustion engine?
The information revolution means the structure of society no longer needs to focus on urban centres. Commuting no longer needs to dominate, and we can free up time for physical activity. Could we envisage a world where miles are minimised and foot travel is the preferred of interacting with our environment?
“If there is a poly pill, we already know what it is… physical activity”
For this to work physical activity needs to be both the most pleasant and most efficient way of doing things, both in work and in leisure, and must be embedded in every aspect of policy planning. We need to prioritise physical activity everywhere, from buildings to public spaces, from homes to offices. We also need physical activity to thrive in schools – it must be part of our way of life early on.
The second asset we have at our fingertips is the potential of personalised medicine. Here I’m talking about the possibility that we can use multi-omic technology, such as genomics, metabolomics, and metagenomics to provide medicine and prevention plans tailored to individuals.
For ageing, imagine that a person at that moment in their lives, perhaps at 40 or 50, when they start to realise that they are not invincible, that mortality will come also to them, and that perhaps they need to make some changes. Imagine they could have a series of tests that could show them how they are likely to age, and how that could change if they were to make some targeted lifestyle changes. Could this empower and motivate personal change?
This approach has huge potential, but we need to ensure that we do not widen existing health inequalities and that access to personalised medicine is available to everyone and anyone.
“…we need to ensure that … access to personalised medicine is available to everyone and anyone”
Our third potential asset is one we could use to reduce health injustice, or increase it. Social networks and big data are emerging as important fields of health research. Could we use these networks to target health education to reduce the health-economic divide?
If we can join social network “case finding” with personalised medicine using remote technologies, such as wearable tech and blood spot cards sent to doctors by post, we could imagine an entirely different world of preventative medicine. Social media is already being used by industry to target individuals – we’ve all seen personalised adverts on our computer screens. Can we do it in the NHS for the benefit of people’s health?
So where do we go from here?
Our lifespan is growing, in excess of our health span and the healthcare system we need to solve this issue is not the one we have come to rely on. We need to build translational ageing research, engage older adults in research, and counter the increasing health inequalities with age. Here I’ve outlined three key assets we can use to address these challenges: physical activity, personalised medicine and social networks. The time has come to use these assets to shape the healthcare system of the future. The third era of medicine must, like the first be an era of preventative medicine, but this time with fewer side effects!
