The healthmatters blog; commentary, observation and review
Upcoming EU data protection ruling gives green light for sharing patient data across health and care sector
Proposed changes to data protection under new EU legislation could provide a significant opportunity for further integration across health and care services and change the way that we deliver care to patients, according to the NHS European Office.
The NHS European Office, part of the NHS Confederation, represents the NHS in the European Union and believes that the upcoming EU Data Protection Package will provide increased flexibility for staff to access medical records, as long as they have a legitimate reason to do so.
An announcement on the Package, which is designed to ensure a more harmonised approach to data protection and privacy across the European Union, is due in early 2016, however the final decisions are expected to be made this week. An informal decision has already been made on the 15th December.
Current data protection legislation makes it difficult for those outside of a regulated profession to access data. This put NHS professionals working alongside local authorities, social workers and charity staff in a difficult position when it came to sharing data. The NHS European Office, has been working to shape changes to the legislation to support greater innovation, research and integration in the NHS. The expected changes in the legislation will mean that those with a legitimate reason to access personal data could have the right to do so as long as national rules or legislation allow it. So while the common law duty of confidentiality remains, national laws and rules could make it easier and clearer for the health service to share data with other organisations in a more joined-up way.
The integration of health and social care, with housing and other services is one of the key issues for today’s NHS. According to the Nuffield Trust analysis released this month, just 3.6 per cent of patients took up over a third of bed capacity in hospitals last winter (1). The majority of these patients were frail and elderly. To ease pressure off hospitals there must be closer partnerships between hospitals, community services and social services so that we can improve the care that we deliver to older people in particular. The sharing of patient data is critical for allowing this process to happen.
Elisabetta Zanon, director of the NHS European Office, said:
“Integration is one of the greatest priorities when developing new models of care and data is a key element when it comes to putting this into practice.
“It is important that we alleviate the burden of data sharing across health and social care. We have worked hard to highlight the need for a more flexible legal framework, which could remove a critical obstacle to the provision of integrated care for an elderly population, often living with two or more chronic conditions.
“While it is vital to maintain confidentiality for personal data, the need for professionals to handle data more effectively and break down the information barriers to allow care to be delivered in a more effective manner has to be acknowledged.
“This will help in developing radical new ways to deliver services as well as support some of the digital projects which are bringing together hospital, GP, admin and audit data to improve delivery and help identify patients who most need health and social care support.”
The NHS European Office has also argued for a clear legal framework on appropriate use of personal data in health research. Critical medical discoveries, such as establishing the link between smoking and cancer, would not have been possible without using personal data. During negotiations, disproportionate limits on the use of personal data in health research were proposed that would have threatened crucial studies across Europe. However the NHS European Office, working in partnership with a group of leading non-commercial research organisations, has been able to push for a legal framework which ensures appropriate and meaningful safeguards and strikes the right balance between protecting the interests of individuals, while enabling research that benefits us all.
Despite many positive changes achieved, one negative change envisaged by the new legislation is that all information should be provided free of charge to the data subject (patient), meaning the NHS could be financially burdened.
Currently the NHS can charge an administrative fee for ‘subject access requests’ where an NHS organisation provides a copy of a person’s medical record.
Although there are no centralised figures on this, it is estimated that a medium-sized district Trust can receive around 50 requests every week. The acute sector could potentially be receiving over 400 000 such requests each year. Under the new rules this information will have to be provided free of charge, so funds to cover this service will need to be found from elsewhere in the Trust’s budget.
A recent paper in the Journal of Happiness Studies shows that, unsurprisingly, some of the differences in national subjective wellbeing are attributable to genetic factors. The authors found that national percentages of very happy people across the most recent World Values Surveys are consistently and highly correlated with national prevalence of the rs324420 A allele in the FAAH gene, involved in the hydrolysis of anandamide, a substance that reportedly enhances sensory pleasure and helps reduce pain. They also found that climatic differences are also significantly associated with national differences in happiness, whereas economic wealth, recent economic growth, rule of law, pathogen prevalence and the distribution of the short versus long alleles in the serotonin transporter gene SLC6A4 are not significant predictors of national happiness.
Countries with high percentages of very happy people comprise mostly northern Latin American countries, with relatively high percentages of Amerindians or people of mixed Euro-American descent, as well as West African countries. The main tribes of Nigeria—Hausa and Yoruba—are next in the ranking. The lowest prevalence of the A allele is found in some Arab and East Asian nations.
. Differences in happiness between Northern and Central or South Europeans also seem attributable to the genetic differences between them, since Northern Europeans have a much higher prevalence of the A allele. North European countries with high percentages of very happy people and high prevalences of the A allele include the UK, Sweden and the Netherlands.
Shaun Subel, Director at VitalityHealth, comments on Blue Monday: “Mental wellbeing is proven to link to both productivity and physical wellbeing, meaning individuals’ physical health and work output are at risk when they suffer from stress or depression. Research from Britain’s Healthiest Company shows that almost three quarters (73%) of the working population are suffering from at least one aspect of work-related stress. The most common sources of such stress are unrealistic demands and time pressures in the workplace (51%), not being consulted about change (31%), and a lack of control in the tasks people are doing at work (27%).
“These stresses may be felt more acutely around Blue Monday as employees struggle to cope with the short winter days, cold weather and low motivation levels they may be experiencing at this time of year. We also know that there are many other sources of stress, unrelated to the workplace, which can have a parallel impact on productivity. One source of stress especially associated with this time of year is financial concerns, which our results show affects 23% of respondents.
“Companies are increasingly aware of the effects of poor mental health on work performance and wellbeing, and many are putting measures in place to counteract the ill effects of stress and low morale. Almost 60% (59%) of companies provide stress management information and a third of companies offer work-life balance programmes (34%) and stress management programmes (32%). However, despite growing awareness of the importance of mental wellbeing in the workplace, it remains for many a complex and emotive issue, and therefore better communication and authentic support from leadership is crucial in informing employees of the benefits of engaging with these initiatives to help reduce stress and improve morale.”
On Monday (18 January 2016) new rules enter into force governing the free movement of professionals (including health professionals) around the European Union (EU). It is a success for the NHS in Europe that will help the service maintain its workforce and keep patients safe.
Existing EU law provides for holders of certain qualifications, such as medical and nursing qualifications, to have their qualifications recognised in EU countries other than the one in which they trained. This means they can practise across the EU with the minimum of barriers and delay.
Key changes for the NHS in the updated rules are:
- Speeded up online procedures for registering general care nurses, physiotherapists and pharmacists
- Introduction of an EU-wide warning system to guard against rogue professionals entering the UK from other EU countries and vice-versa
- Stronger language controls so that regulators can check incomers’ language skills
- Updated minimum training requirements for doctors, general care nurses, dentists, midwives and pharmacists
- A requirement for all EU countries to encourage continuing professional development and report on progress
- The possibility of more EU-qualified practitioners providing “temporary and occasional “ services, requiring more vigilant checks by employers
- Longer term, the possibility of changes to the content and standard of training curricula for healthcare professions.
Elisabetta Zanon, Director of the NHS Confederation’s European Office, said:
“More than any other country in the EU (with the tiny exception of Luxembourg) the UK relies on doctors, nurses and other health professionals trained elsewhere. We couldn’t run the NHS without them. So we welcome moves to cut red tape and encourage people to relocate.
“It’s vitally important that patients are protected from unsafe practitioners as people’s lives are in their hands. That’s why the NHS European Office fought hard for this legislation to include a warning system. It means that, in future, regulatory bodies across the EU will have to alert each other within three calendar days about any registrant who has been banned from practising, even temporarily, to prevent them ’job shopping’ around Europe.
“Our successful lobbying has also resulted in stronger English language checks for healthcare practitioners seeking registration in the UK. We’re delighted that these innovations will make patients in the UK and elsewhere safer.
“We will keep influencing future developments, especially where we think they may not be beneficial. Our job is to stay ahead of the game so that the NHS benefits from the contribution of well qualified incomers without jeopardising high quality care.”
A snap survey by the Institute of Healthcare Management (IHM) has revealed that six in 10 healthcare managers (58%) back strike action being taken by junior NHS doctors in England, with more than four in 10 (43%) saying they ‘strongly support’ it. A third (33%) said they opposed the action.
IHM, which represents almost 3,000 health and social care managers at all levels of the health service across the UK, surveyed members on the day of the first of three planned strikes (12 January 2016), receiving more than 300 responses.
When asked whether managers should join the strike to support junior doctors, the majority (70%) said no, with two in 10 (23%) in favour.
Shirley Cramer CBE, Chief Executive of IHM, said: “Although the junior doctors’ strike may give healthcare managers a headache in the short term, it is notable that a majority of our members are supportive of the action, suggesting junior doctors have legitimate concerns that need to be resolved. This situation is symptomatic of an NHS in which managers and clinicians alike are being asked to do more with less, and Government investment is failing to keep pace with the increasing strain it is being put under.
“It is vital that the Government and the BMA get back around the table to resolve this crisis and avert the prospect of more damaging industrial action. However, in the long term, it must be recognised that the NHS is simply not sustainable without significant further investment to keep existing vital services safe and in preventive efforts to lessen the ever growing demand for them.”
We’re set to have one of the coldest Januarys in years. As winds batter the UK, it can be tempting to stay indoors and hide from the chill, particularly for the elderly. Cosying up under a blanket and sitting by the radiator might be one way of keeping warm, but it could put you at risk of serious illness.
This winter, mobility aids specialists Millercare are raising awareness of circulatory health issues that plague the UK public in colder periods. Cold weather and inactivity are a potentially lethal combination. Slowing our circulation, a lack of mobility in winter could lead to numerous issues, including slow healing of wounds, swelling and deep vein thrombosis (DVT).
DVT affects 1 in 1,000 people in the UK. Whilst you might be able to see it coming from pain and swelling around the calf area, there’s also a chance that no symptoms will show at all.
So, how can we prevent the onset of DVT?
1. Get out of bed as soon as possible – Get up and move around after a night of sleep, instead of lying in. Whilst it’s tempting to stay in the warmth, you need to get on your feet after minimal movement throughout the night.
2. Watch out for swelling – Compression socks are an absolute must for the elderly and don’t have to be worn exclusively on long-haul flights. You should also seek a wide-fit slipper if you find your feet swell over your shoes.
3. Massaging – Focusing on the back of your legs, you can instantly stimulate the blood flow in the targeted area. However, you should seek advice from a professional first. Osteopath & Clinic Founder of TotalHealthClinics, Ben Barker, says: “Massages can be particularly effective for improving circulation because they can stimulate both parts of the circulatory system; the cardiovascular and the lymphatic. However, if you’re already suffering from DVT, massages can be damaging and aren’t recommended.”
4. Ben also suggests hydrotherapy: “Using alternative submission into both hot and cold water, the blood vessels will be consistently stimulated. The blood will rush to the skin in order to regulate the temperature and then be forced back when hot water is introduced.” A foot bath could be used to mimic this sensation in the home.
5. Move your feet whilst sitting – Ben explains: “The deep veins of the lower legs weave themselves around the calf muscles and each time you take a step; the calf muscles squeeze the blood back up the leg. This is increased if you have a good walking action, with a full ‘heel-toe’ action. The blood passes through a one-way valve that stops the blood falling back down. So, the best tip for healthy circulation is to make sure your calf pump works well.”
Anyone can do this from the comfort of their own chair with the help of a Happy Legs Seated Walking Machine. Perfect for the elderly who cannot go out to exercise, this handy piece of equipment keeps your legs active from the comfort of your own chair. Moving your feet gently in a step-by-step formation and mimicking the body’s natural gait cycle, this gadget is clinically proven to aid blood circulation and gives you the much needed exercise you might not otherwise get in winter.
6. Watch your diet – If you’re overweight, you could be at higher risk of suffering DVT. A little light exercise and controlled portions of food can help you reduce your risk.
7. Stop smoking – It can be harder for the elderly to quit as they’re likely to have developed their habit over the years. However, the toxic chemicals in cigarettes can thicken the blood and heighten your risk. Cutting down gradually could help.
8. Keep warm – Whilst it may sound like an obvious one, keeping warm is imperative for the elderly. Microwaveable bean bags and hot water bottles will ensure your feet don’t get cold and will stimulate the blood flow to your legs.
Stewart Clough from Millercare says: “Winter is a difficult time for many vulnerable people in the UK. If you know someone in need, it’s best to keep a closer eye on them at this time of year and encourage them out of the house if possible. If not, regular light exercise and massaging is imperative to combat the effects of immobility. Even those who can’t get up and about much can ensure they’re keeping active with handy tech such as seated walking machines. Sometimes DVT shows no signs at all before it’s too late, so it’s much better to be safe and not sorry.”
BMA calls for UK Governments to prioritise end-of-life care, as new research finds the current provision does not consistently match either the public or doctor’s expectations
The BMA is calling on all UK Governments to prioritise the improvement of end-of-life care and ensure a high-level of care is available across the country, as new research finds that the current provision does not consistently match either the public or doctor’s expectations.
How the health service cares for people at the end of their lives has come under popular scrutiny in recent years through public and political debates around issues ranging from the Liverpool Care Pathway1 to assisted dying2
As part of one of the most significant pieces of qualitative research initiated by the BMA3, specialist social research agency TNS BRMB held a series of events with doctors and members of the public across the UK, in order to build an understanding of both public and professional attitudes and knowledge around end of life care4, and to gauge opinion on the potential impact of physician-assisted dying5,6 upon the doctor-patient relationship, should it be legalised.
The research found that while there were pockets of excellence in end-of-life care across the country, the current system has led to a variation in the level of care between regions, within hospital authority areas, and based on a patient’s condition.
In particular, four areas of concern were raised:
– End-of-life care and dying were seen to be a topic which many people found uncomfortable, even to discuss between family and loved ones. Doctors recognised that communication between them, the patient and the family could be critical in making end-of-life easier to understand and accept, but many doctors felt uncomfortable about the prospect of having to give uncertain answers particularly on the timescale of life expectancy. During the study, very few doctors claimed to have had adequate training in discussing death and the dying process with patients, with many doctors having to develop these skills ‘on the job’. One doctor said: ‘We should say, ‘You are coming to the end of your life’. I think that is where we are failing patients. We are not preparing them. We are not even mentioning the word… So it all comes as a huge surprise… We should be far more frank.’
- Medical services:
– Doctors were concerned that the quality of end-of-life care is varied. There was a generally held view that patients dying from cancer received better medical care because of the way cancer services were organised. Doctors also considered that due to a lack of coordination of care, the planning of end-of-life care often comes too late.
– On the whole, the public had low expectations and little knowledge of end-of-life care with one member of the public stating, ‘Reading between the lines, [end-of-life care] is the basic minimum to keep you ticking over until you fall off the great life conveyor belt and you pop your clogs…’ while another commented that there are ‘short staffed services so you’re not going to get what you need.’
– Concerns were raised about the considerable variation in the quality of end-of-life care in the community, and felt this was reflective of the lack of hospice beds in some areas, alongside poorly resourced and co-ordinated community services including district nursing.
– One doctor told the researchers: ‘If a person is alone… it’s our experience that they don’t die at home. There isn’t the care to look after them… and tragically, they end up spending the rest of their short life [in hospital].’
– Doctors agreed that for end of life care to meet patient needs, it must be well co-ordinated, irrespective of whether the patient was in hospital or living in the community. However, co-ordination of care was said to be variable across the country and where it worked less well was where co-ordination was often ‘assumed’ to have taken place.
– One doctor said: ‘Some patients seem to have a very good outcome. If they’ve got into the right sort of system – they have the right cancer, the right specialist nurse that they’ve dealt with, the right access points then they seem to be fast-tracked into the hospice and so on. Other people haven’t had so much good experience, really.’
Dr Ian Wilson, BMA representative body chair, said:
‘The UK has led the world in developing comprehensive and holistic care for people whose lives are coming to an end. Yet this new research provides further evidence that the provision of end-of-life care remains variable, dependent on a patient’s geographical location, their condition, and their knowledge of local services.
’One member of the public who had recently suffered a bereavement described the quality of end-of-life care as a postcode lottery – a sentiment shared by the public and doctors alike. This is completely unacceptable. What came through loud and clear during the study was that people want to be treated as individuals, with care and compassion, and it is very important to many people that their families are involved in the process, but the current system doesn’t always enable this.
‘While positive steps forward, such as the new guidelines for the NHS, have been made, it is still essential that care for people who are dying becomes a top priority for Governments across the UK. Doctors need the time, support and sufficient training necessary for caring for people at their end of life, and patients must be able to access a high quality of end-of-life care wherever they live, whatever their medical condition.’
“In the world nowadays, we invest five times more in medicines for men’s virility and in silicone for women than for curing Alzheimer’s Disease.
In a few years time, we will end up with old ladies with large breasts and old men with erect penises but neither of them will remember what to use them for.”
Missing the point
An ancient document from the Adam Smith Institute – The Health Alternative (1988) – has caused a stir amongst the government’s enemies, some of whom think its ideas prefigured the 2012 Health and Social Care Act. Readers can decide for themselves by looking at:
News from Nowhere’s moles are struck by what this polemic misses out. It dismisses an insurance-based health service on the (correct) grounds that the US health insurance industry is a mess, but pays no attention to the flourishing health insurance-based services in Europe, particularly in Germany and France. Neither of these countries permit any part of the population to be uninsured, and both spend more on health services than does the UK. Ironically, within three years of publication of the Health Alternative all the health services of central and eastern Europe converted from state-run health care (NHS-style) to German style health insurance systems. Perhaps the Adam Smith Institute is full of Little Englanders?
We all know that Accident and Emergency departments are over-run as sick people find they cannot get a GP appointment. But of course this simple and beguiling explanation is not true. A&E departments are mostly not seeing massive increases in attendance, but they are seeing more complicated ill people who take longer to stabilise and sort out. And they have back pressures from hospitals that have lost beds whilst their local populations have aged. A Nuffield Review by Nigel Edwards (http://www.nuffieldtrust.org.uk/blog/what%E2%80%99s-behind-drop-ae-performance) suggests that NHS management fails to understand the dynamics of the health service and so focuses on the wrong solutions. The drivers behind apparent crises in A&E departments are: patients being put in the wrong wards, who are kept in hospital too long, making the bed problem worse; GPs being given long ‘to do’ lists for patients discharged too early, and not being able to complete them all; hospitals using averages to plan how they will meet demand, which tends not to be average; discharges drifting – or being done too hurriedly; and managers wasting lots of time reporting on targets instead of solving organisational problems. The review, and the lengthy on-line discussion about it, is an education, especially for a health service that likes to blame the patient, or failing that their GP, when things go wrong.
More trouble brewing?
The Department of Health, NHS Employers and the BMA have been discussing a new contract for NHS Consultants. The HSJ reported on the contents of the agreement – which now has to be approved by the BMA’s consultant membership – just after the junior doctors’ strike plan was revived. The draft contract includes:
The removal of the present right that NHS consultants have to refuse to take part in non-emergency work in the evenings, and at night and weekends. The existing 40 hour week would be retained and no specialist would be expected to work more than 13 weekends a year;
A lower starting salary of £70,000 but fewer increments, so that consultants would reach a higher salary sooner; £93,000 after five years
Lowering the top of the consultant pay scale to £107,000 with additional amounts dependent on their role, responsibility and out of hours work.
Abolition of clinical excellence (‘merit’) awards, with removal of those currently held; and the extension of normal working hours to include evenings and Saturdays.
This makes sense to News from Nowhere. More consultants are needed at nights and during weekends to make sure that hospitals provide optimal care. The abolition of clinical excellence awards – additional salary payments given to the best specialists – is long overdue. Of course a reduction in income may be made up by increasing private practice, which the government also wants. Assuming that the BMA’s 41, 000 consultant members in England accept the proposed new contract, that is.
No more waiting?
PushDoctor.co.uk, Europe’s largest online GP marketplace, is worth watching (www.PushDoctor.co.uk). It has just raised $8.2million to expand its on-line GP service in the UK. Patients can connect to GMC registered private GPs in minutes in a video-surgery, and benefit from instant access to professional medical advice from a UK doctor who can prescribe, refer or provide a sick note. The service charges £25 for a 10-minute appointment with a General Medical Council-regulated GP, while prescriptions are £4.50 and referral letters or fit for work notes are £12.50.
Harms of screening are certain, but benefits in overall mortality are not … “We must be honest about this uncertainty,” they say!
Cancer screening has never been shown to “save lives” as advocates claim, argue experts in The BMJ today. This assertion rests on reductions in disease specific mortality rather than overall mortality, say Vinay Prasad, Assistant Professor at Oregon Health and Science University and colleagues.
They argue that overall mortality should be the benchmark against which screening is judged and call for higher standards of evidence for cancer screening.There are two chief reasons why cancer screening might reduce disease specific mortality without significantly reducing overall mortality, write the authors.
Firstly, studies may be underpowered to detect a small overall mortality benefit. Secondly, disease specific mortality reductions may be offset by deaths due to the downstream effects of screening. Such “off-target deaths” are particularly likely among screening tests associated with false positive results (abnormal results that turn out to be normal) and overdiagnosis of harmless cancers that may never have caused symptoms, they explain. For example, prostate cancer testing yields numerous false positive results, which contribute to over one million prostate biopsies a year – which, in turn, are linked to serious harms, including admission to hospital and death. Men diagnosed with prostate cancer are also more likely to have a heart attack or commit suicide in the year after diagnosis or to die of complications of treatment for harmless cancers.
Yet data has shown that the public has an inflated sense of the benefits and discounted sense of the harms of screening, they write.For instance, in one study 68% of women thought that breast screening would lower their risk of getting breast cancer, 62% thought that screening at least halved the rate of breast cancer, and 75% thought that 10 years of screening would prevent 10 breast cancer deaths per 1000 women.Yet they point out that the most recent Cochrane review of PSA screening trials “failed to show a reduction in disease specific death,” while their mammography review “did not show reduced breast cancer deaths when adequately randomised trials were analysed.” Consideration of harms also becomes more important in the absence of clear overall mortality benefit, they add.
Advocates of screening have emphasised its benefits, sometimes verging on fear mongering, note the authors. Others, including us, think that shared decision making should be the focus. “But as long as we are unsure of the mortality benefits of screening we cannot provide people with the information they need to make an informed choice. We must be honest about this uncertainty.”
To find out whether screening saves lives, they say investing in large trials that can determine overall mortality is “worth the expense compared with the continued cost of supporting widespread screening campaigns without knowing whether they truly benefit society.”
They acknowledge that political will, financial resources, and public perception “are common hurdles in building support for resource intensive scientific endeavours, and developing consensus on these matters will take time and effort.”
And they call on healthcare providers “to be frank about the limitations of screening” and for higher standards of evidence “to enable rational, shared decision making between doctors and patients.” In an accompanying editorial, Gerd Gigerenzer argues that “rather than pouring resources into ‘megatrials’ with a small chance of detecting a minimal overall mortality reduction, at the additional cost of harming large numbers of patients, we should invest in transparent information in the first place.” He explains that even if the uncertainty of screening on overall mortality is not removed, we can provide people with useful tools to help with informed decision making, adding that “it is time to change communication about cancer screening from dodgy persuasion into something straightforward.”
Useful tools such as fact boxes can illustrate harms associated with mammography screening, for example, by reporting all three measures of mortality (see article for an example). “The harms are specified numerically so that an informed decision about screening is possible. Every article and pamphlet should provide a fact box summary to facilitate informed decisions,” he concludes.