Born in Bradford project takes on infant mortality
Medical research is not a subject easily understood or absorbed by the general public. Studies reported in the press can seem remote from anyone not directly affected by them or the condition being researched. But a project that aims to track the lives of 10,000 children will surely attract attention through the size of its ambition.
Born in Bradford is such a study (click here for a gallery of pictures from the project). Unprecedented in its scale, it aims to track the health of 10,000 babies born in the centre of Bradford and to determine the causes of ill health.
Although it only began in March 2007, by the end of October around 2,600 babies were signed up, and by the time the project is a year old, there are expected to be 4,000. It is thought it will only take two to three years to get the full cohort of 10,000 on board.
The West Yorkshire city is eminently placed to be the centre of the study for a number of tragic reasons. Chief among them is that its infant mortality rate is around twice the national average, at 9.1 deaths per 1,000 live births. Concern about this in Bradford is not new. Astonishingly, the first official report into the issue was published in 1915.
As the Bradford Infant Mortality Commission noted in 2006: "That we were still trying to solve this distressing problem a century after the first report was published powerfully underlines just what a complex problem infant mortality remains."
Almost of equal concern is that the reasons behind the figure are unexplained. The numbers are fuelled by an above-average birth rate: 73.4 babies rather than 56.8 per 1,000 women of child-bearing age. Bradford Royal Infirmary, part of Bradford Teaching Hospitals foundation trust and home to the Born in Bradford recruitment team, sees around 15 births a day.
The city also suffers high levels of deprivation. Bradford city is the eighth most deprived community in the country and 60 per cent of babies born there are born into the some of the most deprived parts of the country. But the commission found that although this was an important association, it did not explain the size of the difference in the figures.
This is the scale of the challenge being tackled by the Born in Bradford project, which aims to respond to the commission's recommendations of robust monitoring and analysis of infant mortality.
The project has been branded a chance for the city to do something about its health problems and it is striking how upbeat everyone involved in it is, given how grim the statistics are.
For many, it is an enticing prospect. Throw in some of the highest levels in the country of child obesity, diabetes, heart disease and vascular disease and it is every health researcher's dream.
"This is a rich soup, a very diverse population with huge health problems. The archetypal poor, deprived multi-ethnic city," says Born in Bradford programme director John Wright, also director of the Bradford Institute for Health Research.
He is thrilled at securing such a huge research programme for the city. He says the project is unique in being embedded in the NHS - meaning research can link directly into clinical practice.
"This puts academic work at the heart of what we are about as an organisation. Routine clinical work will improve in quality. Its potential is almost unlimited," says trust chief executive Miles Scott.
The project is clear in its rather daunting aims. They include determining the prevalence of congenital abnormalities in the city, comparing birth weights of Asian and European-origin mothers, whether being prone to diabetes is present at birth, the effects of dietary exposure to some chemicals, the contribution vitamin D makes to gestational conditions and outcomes and the effects of ethnic density on health outcomes.
"Born in Bradford is the first multi-ethnic, from birth, cohort study in the world. It will be a barometer for a rapidly changing society," says Dr Wright. "What we want out of it is specialist research on the effect of geno-toxins on children and their genes. We will be able to link up all the lifestyle information with all the information in the system about a child's health. At the minute everyone is looking at this data but no one is linking it up."
The study may produce evidence that what happens in the womb can be the principal determinant of a person's health for the rest of their lives. In an age where adults and children are constantly told that it is their lifestyle and diet that makes all the difference to their current and future health, its impact could be dramatic.
"If we can understand what happens we could shift the emphasis of disease prevention," says Dr Wright.
The potential shift in health promotion and preventive care is equally acknowledged by Bradford and Airedale teaching primary care trust, another NHS partner behind the project.
Its medical director, Dr Peter Dickson, acknowledges the potential for controversy. "If there is something we need to do, we need to know what to do about it; it may not be easy or comfortable," he says. "We want to deliver on hard evidence."
There is other significant potential for controversy. The prevalence of infant and childhood disability, such as hearing and visual impairments and cerebral palsy in children of Pakistani origin, has been found to be as much as 10 times higher than in other ethnic groups.
Bradford also has the highest rates of children with progressive intellectual and neurological degeneration in the UK and 140 recessive genetic disorders have been identified in local children. These are much higher than figures elsewhere.
Currently around 70 per cent of the women going through glucose tolerance testing at the Bradford Royal Infirmary clinic (see below) take up the offer to join the study, of whom around 50 per cent are South Asian. Although the ethnic group makes up around one in seven of the population of Bradford, around half of all births are to South Asian women, contributing to a higher birth rate than the national average.
What is often suspected, but never proved, is the highly controversial thesis that first-cousin marriage among the Pakistani community plays a significant role in tragic infant mortality and disease statistics. But any results from Born in Bradford that imply an Asian population is more liable to death and disease because of a long-standing cultural tradition could be lighting a powder keg, both in a city that has been racked by racial tensions in recent years and further afield.
The implications are hardly lost on the Born in Bradford team. In fact, they and everyone connected with the project visibly stiffen when asked directly about first-cousin marriage.
"First-cousin marriage does increase risk; although we cannot generalise results, there is an association but one of the things we do not understand is how that works," says Dr Wright. "There are common opinions that are held but we are waiting to see the results in order to inform the evidence and to be able to give clear evidence to parents. It is a practice embedded in the Muslim population."
With links to other agencies in education and the community and a high profile in the city's press and media as well as its health bodies, it is hoped Born in Bradford will help increase general knowledge of the causes of ill health.
"There is a real sense of people wanting to contribute," says Dr Wright.
Providing the money is available, in theory the project could follow the 10,000 Born in Bradford babies for ever. A dream scenario would involve studying their children and grandchildren, too. But for the meantime, it is hoped that funding will allow the study to follow the babies until they are at least eight years old.
Start them young: how born in bradford recruits
Unsurprisingly, to enter the Bradford Royal Infirmary maternity unit from 8.30am on most weekdays is to find yourself surrounded by pregnant women.
Many are there to be tested for their risk of diabetes; all pregnant women in the city are offered a glucose tolerance test at 26-28 weeks. It is at this clinic that Born in Bradford finds its recruits.
Born in Bradford lead research midwife Dagmar Waiblinger estimates that up to 20 women a day (from the 20-25 appointments per morning) are being recruited. An information pack is given to mothers at around 12 weeks gestation and midwives are primed to mention it in antenatal appointments.
In the antenatal clinic, the project's branding is everywhere. Mumtaz, a Bradford food and restaurant firm and one of the project's sponsors, has sponsored a branded drinks machine.
From those who give consent, a blood sample is taken. Before giving another, they are interviewed in an exhaustive questionnaire about health, background and lifestyle.
Translation services can be arranged for a number of languages, although Urdu and Mirpuri are so commonly spoken that a number of the Born in Bradford staff taking the questionnaires speak one or both of them.
For the interviews, up to five mothers to be and their interviewers are divided at once by partitions in the rather cramped room that serves as the project's office.
Sitting in on the interviews is a fascinating process. Of the two that HSJ sits in on, the two mothers to be are very different. One is married and expecting her third child while the other is 16 but looks younger and is accompanied by her own mother, who answers or prompts answers for her for much of the interview.
The amount of detail the women is asked is exhaustive and could be seen as downright nosy.
In addition to questions about the women's health and family background, is a detailed list of questions about what kind of food they eat - even the type of bread they eat, if it is toasted and how often they eat it - to the number of baths or showers taken a week.
Questions about a woman's financial background include details such as if she considers she has enough money to be able to pay bills or have a family holiday for at least a week every year.
This is in addition to a questionnaire the women have already filled in about the amount of meat, processed meat and pastry they eat and how the meat is cooked; with a guide to indicate how well done it is on the outside. They are also asked if they eat five pieces of fruit or vegetables a day.
To prevent fears that the information may not be anonymous, names are not put on the forms, only a registration number is used on both these and any samples that are taken. Each interview takes around 40 minutes.
The women are then weighed and measured, have a body mass index taken and have the fat on their arms measured.
Interviewees are also asked how they are feeling physically and psychologically - in the form of a depression index - and about exercise taken.
After birth, every baby's child health record is adorned with a Born in Bradford sticker so health visitors know they are in the scheme. The baby's height, weight and abdominal circumference are then measured for the study.
Meet the parents: getting the measurements
Keeping track of the babies born at the Bradford Royal Infirmary's two ante- and postnatal wards means ward-based work for the project goes on seven days a week.
On the day of HSJ's visit, project administrators Shaista Meer and Sairah Mahmood were at work. Ward-based tasks include finding babies already registered with the project to take measurements while aiming to recruit their fathers and mothers not already signed up.
Upon first entering the ward, they ask the midwifery sister if there is anyone who should not be approached, such as if they or the baby have suffered complications. The sister warns that one of the newly delivered women speaks a language for which they are struggling to get translation services.
Ms Meer and Ms Mahmood stick their heads round the doors of ward bays or rooms to meet the babies, offer congratulations to the mothers and measure the amount of fat on the baby's arms and back. Samples of umbilical cord blood have already been taken shortly after birth in the delivery suites.
If the father is present they ask him if he wants to sign up, too - most seem amenable and provide a spit sample.
After a few more words of congratulations, the babies are given a Born in Bradford bib and the administrators move on.
They report mixed success with ward-based recruitment and testing.
"Some of the Asian women or their husbands get a bit twitchy; they think they are being spied on or the husbands don't know that their wives have signed up," says Ms Mahmood.
As well as recruiting fathers - about 20 per cent of whom have signed up so far - the study wants to boost the number of teenage mothers involved.
Some of the questions put to the mothers
Age of first period.
Nature of home ownership and number of bedrooms.
Age of household members.
Countries and ethnic background of origin of baby's parents and of their parents, and if the mother and father or their parents or grandparents are related. If any of them were born in the Pakistani district of Mirpur, the name of their town or village and biraderi (clan or extended family) is recorded.
Employment and education status of the baby's parents.
Income of household.
Can the household afford: having friends and family round for a drink; two pairs of all-weather shoes; a decent state of decoration for their house; savings of at least£10 a month; money to replace worn-out furniture or electrical goods; money to spend on yourself or a hobby; money to keep the house warm and up to date with bills; enough bedrooms for each child to have one each.
If mother smokes or has ever done.
If she drank in first three months of pregnancy and how many units.
Wheat intake in a week.
Drink intake (including types of tea).
Water consumption, and if the water is filtered.