Tag Archives: could

Rapid use of blood drug could save thousands of lives, study finds

Immediate treatment with a cheap and widely available clot-stabilising drug could save the lives of thousands of people each year, including women with severe bleeding after childbirth, a study has found.

A meta-analysis of more than 40,000 patients found that the likelihood of death due to blood loss was reduced by more than 70% if tranexamic acid was administered straight after injury or birth.

But the effectiveness of the drug – available over the counter in the UK to women suffering from heavy periods – diminished over time. The chances of survival fell by 10% for each 15-minute delay, with no benefit seen when administered after three hours.

Postpartum haemorrhage (excessive bleeding after childbirth) is the leading cause of maternal death worldwide, killing about 100,000 women a year, mostly in low- and middle-income countries. More than 2 million people worldwide die from traumatic extracranial bleeding, often as a result of road traffic injuries and violence.

Prof Ian Roberts from the London School of Hygiene and Tropical Medicine, who initiated the study, said: “Responding quickly can be the difference between life and death and that means patients must be treated urgently at the scene of injury or as soon as the diagnosis of haemorrhage is made. We have to make sure tranexamic acid is available before patients reach hospital and whenever a woman gives birth.”

Antifibrinolytic drugs work by stopping blood clots from breaking down and reducing bleeding. They have been used for many years to reduce heavy menstrual bleeding and are often given during surgery to reduce the need for blood transfusions.

For the meta-analysis, published in the Lancet on Tuesday, the authors identified a total of 13 tranexamic acid trials conducted between 1946 and 2017 – but only two assessed the impact of treatment time on its effectiveness.

Their analysis showed that almost two-thirds of bleeding deaths occurred within 12 hours of onset (884 of 1,408 bleeding deaths). Deaths due to postpartum haemorrhage peaked two to three hours after childbirth.

Survival from severe bleeding increased by a fifth with the use of tranexamic acid compared with placebo, irrespective of the site of bleeding. Only 1.5% of women given tranexamic acid died of bleeding versus 1.9% of women given placebo plus standard care, and 4.9% of trauma patients given tranexamic acid died of bleeding compared with 5.7% given placebo and standard care.

The researchers took age and systolic blood pressure into account. They found no evidence of complications or increased risk of clotting (ie heart attack, stroke, pulmonary embolism, and deep vein thrombosis) compared with placebo, and fewer cases of heart attacks were noted with tranexamic acid, which is also used as a skin whitener in Japan and the far east.

The study builds on previous research which showed that tranexamic acid cut deaths due to postpartum haemorrhage and bleeding after serious injury by about a third if given within three hours of the onset of bleeding.

Roberts said: “Tranexamic acid is safe, cheap, easily administered, and does not need to be refrigerated. Most haemorrhage deaths occur within hours of bleeding onset. Prompt treatment has the potential to save thousands of additional lives worldwide every year.

“Given the importance of early treatment, time from bleeding onset to early treatment should be audited and communicated to healthcare professionals. Establishing national or regional quality improvement initiatives, with best practice benchmarking of time to treatment, might improve survival.”

He said more research was needed to understand the mechanism of the treatment.

Streptococcus vaccine ‘could prevent over 100,000 baby deaths worldwide’

More than 100,000 stillbirths and baby deaths worldwide could be prevented by the development of a vaccine against an infection commonly carried by pregnant women, according to a groundbreaking report.

The impact of disease caused by group B streptococcus (GBS) has not been properly chronicled before and only in relatively recent years has anyone taken seriously its role in the deaths of babies in the womb as well as in the early days of life.

Worldwide, more than 21 million pregnant women carry the bacteria which used to be thought harmless, say researchers from the London School of Hygiene and Tropical Medicine (LSHTM). Today it is recognised as a cause of septicaemia and meningitis in newborns, with potentially deadly effects, and also as a major cause of stillbirths, but vaccines against it are only now in development.

Eleven papers have been published in the journal Clinical Infectious Diseases and presented at the American Society of Tropical Medicine and Hygiene Annual Meeting in Baltimore, revealing the scale of infection and the damage it causes. They say there are 410,000 cases of disease every year and 147,000 stillbirths and infant deaths. One in five pregnant women carries the bacteria, which can cause meningitis and also life-threatening septicaemia – blood poisoning – in them and their baby.

In wealthy countries, women thought to be at risk are given antibiotics in labour, but that does not prevent stillbirths and is not a practical solution for Africa and other developing countries where the infection rate is high. It could also contribute to antibiotic resistance, which is a global problem.

“Vaccines are the way to go,” said Joy Lawn, co-lead author of the papers and professor of maternal, reproductive and child health at the LSHTM. “They are on the way but it is going to be probably a five-year time horizon. The vaccine process needs to be accelerated. The World Health Organisation is already moving to make sure that when we get a vaccine it will be available for countries where the need is highest.”

In affluent countries, parent groups have called for more action against GBS, including universal testing to check whether pregnant women are carrying the bacteria.

“In the US particularly and also in the UK, it is an issue that is upsetting to parents, because neonatal death rates [in the first month of life] are quite low now and this happens to articulate, rich families; people don’t expect their children to die any more,” said Lawn.

But most of the focus has been on babies born alive who then become ill and die, or are damaged. There has been little attention to GBS as a cause of stillbirths. The team calculate it causes 90,000 infant deaths and 57,000 stillbirths worldwide at a very conservative estimate. There is no global goal to reduce stillbirths, as there is for newborns. “There are 2.6 million babies dying in the last three months of pregnancy, the same number as in the first month of life,” said Lawn. “For the baby who dies five minutes before birth, there isn’t a global goal.”

Stillbirths are under-investigated even in affluent countries, partly because of a sense of fatalism and also stigma. “People don’t know what the causes are. This [GBS] is an incredibly preventable cause,” said Lawn.

The researchers say that a vaccine which was 80% effective and reached 90% of women, could potentially prevent 231,000 infant and maternal cases of disease.

Dr Keith Klugman, director of the pneumonia team at the Bill & Melinda Gates Foundation, which funded the research, said: “The first few days and weeks of a baby’s life are the most vulnerable – by far. By filling in one of the great voids in public health data, this work provides crucial insight and shows the pressing unmet need for the development of an effective GBS vaccine. Immunising expectant mothers is a potentially groundbreaking approach that could dramatically reduce the number of maternal and child deaths.”

Johan Vekemans, co-author of the papers from the World Health Organisation, said an unacceptable number of families were affected. “It is now essential to accelerate the GBS vaccine development activities,” he said.

Drug giants threaten NHS with legal action over cheaper drug that could save £84m a year

Two multinational drug companies are threatening legal action to prevent patients being offered a cheap version of an effective drug against blindness which could save the NHS millions of pounds.

Twelve NHS clinical commissioning groups (CCGs) in the north-east of England say that saving money by buying a safe and effective – but 10 times cheaper – version of the licensed drug for wet macular degeneration is far preferable to cutting costs in other ways, for instance by rationing fertility treatment or cataract operations.

The licensed drug for the condition, which is the commonest cause of blindness in older age, is Lucentis (known generically as ranibizumab). But more than a decade ago, doctors discovered that an anti-cancer drug, Avastin (bevacizumab), gives results that are just as good – and when it is split into the tiny doses needed to inject into the back of the eye, it is a fraction of the price.

Genentech, the manufacturer of Avastin, refused to apply for a licence for it to be used in eyes. But in 2012, the IVAN trial, funded by the NHS, showed that the two drugs were equally safe and effective and that its widespread use could potentially save the NHS more than £84m a year. Avastin is widely used in the United States and other countries around the world to treat macular degeneration.

It is not much used in the UK, however, and now the two drug giants that market Lucentis, Novartis and Bayer, have warned the NHS commissioners that they will seek a judicial review if they go ahead with their plans to offer Avastin.

Dr David Hambleton, chief officer of the South Tyneside Clinical Commissioning Group, one of the 12, said that offering Avastin first to patients, but with the option to choose Lucentis if they preferred, had the potential to save significant amounts of money without sacrificing safety or efficacy.

“Lots of the decisions and choices we are potentially facing are much less palatable than this one,” he told the Guardian. “This seems to most people to be an absolute no-brainer.”

Explaining the new policy in the British Medical Journal, he writes: “Every patient who chooses the cheaper alternative drug will help the NHS to fund important medical treatment in other areas. We want to have informed conversations with our patients so that they understand the wider effects of the choices we collectively make.”

Choosing Avastin could save the region up to £13.5m a year, which could pay for an extra 270 nurses or 266 heart transplants, says the BMJ.

In the UK, he said, “legal technicalities” stand in the way of more general use. Doctors are entitled to use any drug in their patients that they consider they need, but the General Medical Council, which regulates the profession, says they should choose a licensed over an unlicensed medicine if they are equally good. Avastin is not licensed for macular degeneration, but it is licensed for cancer treatment. Hambleton observes that a licence is simply a “market authorisation”, entitling a drug company to sell a product.

The National Institute for Health and Care Excellence (Nice) has produced draft guidelines for the NHS on the treatment of macular degeneration which endorse the safety and effectiveness of Avastin, but reflect the GMC’s position that it is not licensed for the condition.

NHS Clinical Commissioners, the umbrella body for the CCGs, strongly backs the use of the cheaper drug. “Where cheaper medicines that are equally clinically effective as a more expensive alternative are available, we call on the Department of Health to ensure that every possible avenue is explored to enable these savings to be realised. The time to take action on the use of this drug at a national level, to release cost-savings to use in other priority areas, is now,” it said in a statement.
In a statement, Bayer said that splitting doses of Avastin into tiny injectable amounts created a different and unlicensed medicine. “The principle of using unlicensed medicines when licensed and Nice-approved options are available runs the risk of setting a precedent that undermines the regulatory framework and NHS constitution. Bayer is currently considering its position including the possibility of legal proceedings against the CCGs who have implemented the policy,” it said.

Novartis said the new policy of the 12 CCGs “is not in line with the current UK and EU legal and regulatory framework, the purpose of which is, among others, to protect patients and monitor the safe, appropriate use of medicines. The framework provides that unlicensed medicines can only be used where there is an unmet medical need. That is not the case here as there are two licensed products available in the UK, both of which have been approved by Nice as clinically and cost effective.”

The 12 CCGs are Northumberland; Newcastle Gateshead; North Tyneside; South Tyneside; Darlington; Durham Dales, Easington and Sedgefield; North Durham; Hartlepool and Stockton-on-Tees; Cumbria; Sunderland; Hambleton, Richmondshire and Whitby; and South Tees.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.

Could science fiction save NHS data and improve our health? | Anne Perkins

The NHS lurches its way through funding crises and organisational dilemmas. It faces the challenge of antibiotic resistance and it must ponder the deeply conflicted question of the uses and abuses of new technology. Its short-term horizon is so thronged with urgent problems that it would be a surprise if anyone had the spare capacity to consider how things could look by the end of the century.

A new social enterprise, Kaleidoscope Health & Care, however, decided it would be useful to try to raise the collective medical gaze into the very long term. Last year it organised a science fiction short story competition and invited writers to consider healthcare in 2100. The winners are announced on Thursday.

The stories (I was a lay judge) raised some fundamental questions about how the explosion of innovation in genetics and biotechnology would reshape our sense of being human. Most writers were anxious about how to preserve equality of access to healthcare; one of my favourite stories explored the scope for understanding better what we already know about the human biome and its relationship with the natural world. No one considered what seems to me likely to be the existential threat to the NHS, its reluctance to convert itself from a sickness to a health service. But if that particular problem isn’t resolved by 2100 it will probably be too late.

The most persistent anxiety was about the ownership and exploitation of genetic data. Not surprising: only consider the fog that shrouds the subject now, where knowledge and expertise is all on one side. Merely contemplating the mix of big data analysts and, different but related, artificial intelligence developers on the one hand, and the vast resource of the NHS’s 70 years of records of the nation’s health on the other makes me feel a bit like King Logenbula faced with Cecil Rhodes, slavering over his goldfields. You know there’s only going to be one outcome.

In the 21st-century dystopia of some of the entries for the Kaleidoscope prize, big data becomes big business, captures the secret of life, or at least of postponing death, and then exploits human vulnerability – the desire for perfection, the urge to protect – to enslave us all. It feels horribly plausible. It convinces me that something needs to be done, now.

The relationship between the use of NHS data, its huge potential to unlock understanding and at the same time the enticing prospect of building a world-beating life sciences industry by exploiting it – the sort of thing envisaged in the government’s recent life sciences industrial strategy – is something that ought to be keeping us all awake at night. Instead, most of us park it in the too complicated file, and if asked about data sharing tick the box saying no.

But that’s a mistake too. NHS data is an astonishing resource. It has the capacity to transform our understanding of care and drugs and environmental and occupational impacts. There may be arguments for saying it’s best left undisturbed; but already, cash-starved NHS managers are plotting ways of monetising it. So, instead of leaving it to them we should demand that it becomes a much more open and public process that sets out to inform and engage, instead of walling off knowledge behind a barricade of techspeak.

Parliament, since government may not see what’s in it for them, should consider, say, the experience of the Human Fertilisation and Embryology Authority as a model for how a complex scientific and ethical subject can be handled so that it builds support from both the medical and scientific community and the public.

The mission statement of the NHS Data Commission would be similar: to build popular confidence by bringing expert scrutiny to the way the life sciences industry wants to use information gained from patients with the power to dictate the terms. Along with scientists and ethicists, it would include intellectual property and privacy lawyers who understand the implications of developments. Its meetings would be public and its reports published, with a particular remit to be accessible. It would be a proper basis for a new industry.

The purpose of good science fiction writing is, at least partly, to reflect on the present. That’s what the Kaleidoscope prize does. It would be foolish not to listen.