Government should do more to help people who use online health services

12 October 2010

The Government should do more to help people find trustworthy health websites and use online health services safely and effectively, says a new report on the ethics of ‘personalised healthcare’. The Nuffield Council on Bioethics warns that whilst online health information and services are convenient to use and extend choice, they could mislead, confuse or create unnecessary anxiety for the people who use them.

To minimise these potential harms the Council is calling on the Government to set up an accreditation scheme for online health record providers, for DNA testing and body scanning services to be better regulated, and for doctors to receive training on advising patients who use the internet to look for health information and to buy medicines online.

“The internet is now often the first port of call for people to find out more about their health. People need to know where they can get accurate health information, how to buy medicines online safely, and how any personal information about their health posted online might be used,” said Professor Christopher Hood, chair of the Working Party that produced the report.

The report also looks at direct-to-consumer personal DNA testing services that claim to predict your risk of developing diseases in future, and body scanning services which are offered to healthy people as a check-up. These services are promoted and can be booked online.

“The results of personal DNA testing and body scanning are often hard to interpret, unreliable and may cause people unnecessary anxiety,” says Professor Hood. “Better regulation is needed to ensure people are fully aware of the limitations of these services.”

The report, which considers a range of new technologies and services that are promised by their providers as offering more ‘personalised healthcare’, makes a number of recommendations for policy. In each case, the need to protect people from harm and the need to protect people’s personal information is weighed up against the need to give people freedom to make their own choices.

Health information websites

“We recommend that all websites offering health information and advice should state where the information originates and what it is based upon, who wrote it, and how the author or organisation is funded. Advertisements for medicines and products should also be clearly distinguished from other types of information,” said Professor Hood.

The Council concludes that the best websites for people to use when looking for health advice are based on high quality peer-reviewed research, from independent not-for-profit organisations, and are independently evaluated and continuously updated.

It says the NHS websites and the websites of the National Institute for Health and Clinical Excellence (NICE) generally meet these criteria.

In 2009 an Oxford Internet Survey found that in 2007 and 2009, 68% of British internet users had used the internet to look up health information.

Online pharmacies

The Council endorses Great Britain’s registration scheme for online pharmacies but recommends that the Government should make more information about it available, as people don’t always know that the scheme exists.

“Britain is leading the way when it comes to online pharmacies and patient safety, but there is nothing stopping people buying medicines from internet pharmacies based in other countries that are not regulated in the same way,” said Professor Nikolas Rose, one of the authors of the report.

“If you choose to buy medicines from a website that is not certified in the same way as registered online pharmacies in the UK, you risk buying harmful, fake or low quality products. You could also miss out on advice from doctors and pharmacists about adverse effects and interactions with other medicines you may be taking.” added Professor Rose.

The Council recommends that the UK registration scheme should be mirrored elsewhere in order to restrict the sale of medicines, including antibiotics, over the internet.

In 2008 approximately two million people in Great Britain were regularly purchasing pharmaceuticals online, both with a prescription from registered UK pharmacies and without prescriptions from other websites. A 2009 survey found that more than one in seven adults asked had bought a prescription-only medicine online without a prescription.

Online health records

Online health record services such as Google Health and Microsoft HealthVault allow people to create an account for storing information about their current and past health problems. The full versions of these services enable people to share their data with doctors and other service providers, although this is only offered in the US at present. The NHS currently intends to offer people in England an online summary of their health records through its HealthSpace website.

“These services could give people a convenient way of taking more control of their health records. However, it is paramount that people are fully aware of how their personal information is going to be stored and used before they sign up,” said Professor Hood.

The Council recommends that Governments should set up an accreditation system for online health record providers to improve transparency and standards on how personal information is stored and used. Companies should also establish systems to safeguard the confidentiality of data if they change ownership or go into administration.

Direct-to-consumer personal genetic profiling services

Direct-to-consumer personal genetic profiling services are often marketed online to healthy people as a way of finding out their risk of developing serious conditions such as diabetes, heart disease, Parkinson’s disease and some cancers, through the analysis of a DNA sample they provide.

“Commercial genetic profiling services may seem to be providing more choice to consumers, but the test results can be unreliable and difficult to interpret and they are offered to people with little or no genetic counselling or support” said Professor Rose.

“People should be aware that other than prompting obvious healthy lifestyle choices such as taking more exercise, eating a balanced diet and reducing alcohol consumption, the tests are unlikely to inform them of any specific disease risks that can be significantly changed by their behaviour.”

Currently there is no overarching system of regulation for personal genetic profiling. The Council says that claims that these services are leading to a new era of ‘personalised healthcare’ are overstated and should be treated with caution. It recommends that regulators of these services should request more evidence from companies to back up the claims they make about the predictive value of their tests.

Direct-to-consumer body scans

The report also considers direct-to-consumer CT, MRI and ultrasound body scans as a form of ‘health check-up’ for people without pre-existing symptoms.

Whole body CT scans carry serious physical risks from the radiation involved. The Council says that the commercial sale of whole body CT scans as a health check for people without prior symptoms of illness should be banned, as any potential benefits do not justify the potential harms caused by the radiation.

The scans may be hard to interpret and they often show up ‘abnormalities’ which are actually harmless, but which could lead to undue anxiety or further tests or treatments which carry risks. The report also recommends that GPs should receive specific training on giving advice to patients about direct-to-consumer body imaging services, and about making referral decisions on the basis of these tests.

Shining a light — literally — on diabetes

Device from MIT’s Spectroscopy Lab could help diabetic patients monitor their blood glucose levels without finger pricks.

Anne Trafton, MIT News Office

noninvasive way to measure blood glucose levels
MIT researchers have devised a way to measure blood glucose levels by shining near-infrared light on the skin. Photo: Patrick Gillooly

People with type 1 diabetes must keep a careful eye on their blood glucose levels: Too much sugar can damage organs, while too little deprives the body of necessary fuel. Most patients must prick their fingers several times a day to draw blood for testing.

To minimize that pain and inconvenience, researchers at MIT’s Spectroscopy Laboratory are working on a noninvasive way to measure blood glucose levels using light.

First envisioned by Michael Feld, the late MIT professor of physics and former director of the Spectroscopy Laboratory, the technique uses Raman spectroscopy, a method that identifies chemical compounds based on the frequency of vibrations of the bonds holding the molecule together. The technique can reveal glucose levels by simply scanning a patient’s arm or finger with near-infrared light, eliminating the need to draw blood.

Spectroscopy Lab graduate students Ishan Barman and Chae-Ryon Kong are developing a small Raman spectroscopy machine, about the size of a laptop computer, that could be used in a doctor’s office or a patient’s home. Such a device could one day help some of the nearly 1 million people in the United States, and millions more around the world, who suffer from type 1 diabetes.

Researchers in the Spectroscopy Lab have been developing this technology for about 15 years. One of the major obstacles they have faced is that near-infrared light penetrates only about half a millimeter below the skin, so it measures the amount of glucose in the fluid that bathes skin cells (known as interstitial fluid), not the amount in the blood. To overcome this, the team came up with an algorithm that relates the two concentrations, allowing them to predict blood glucose levels from the glucose concentration in interstitial fluid.

Click the link to read more about noninvasive way to measure blood glucose levels

£7.5 million investment in ambulance defibrillators will save more lives in Scotland

The Scottish Ambulance Service (SAS) will install new lifesaving defibrillators on all of its ambulances this year. The state of the art technology will replace existing defibrillators in a £7.5 million initiative funded by the Scottish Government Health Department.

The new Laerdal HeartStart MRX machines were chosen after an extensive procurement process, which included weeks of field trails with ambulance crews around the country. They include 12 lead ECG diagnostic and interpretive capabilities, which provide greater detail on patients’ cardiac rhythm and diagnosis. This allows better quality information to be transmitted to specialist receiving cardiac centres while the ambulance is en route.

Pauline Howie, Chief Executive, Scottish Ambulance Service, said:
“In most instances of heart attacks, ambulance staff are the first response. It is important that our paramedics and technicians have the most advanced technology available to help them deliver the highest standards of care to patients. The new defibrillators will be introduced into all of our 526 emergency ambulances by the end of the year and will make a significant contribution to saving lives in Scotland on a daily basis.

“Our staff were heavily involved in the process of choosing the preferred solution and the combination of portability, functionality and reliability were key factors in the final decision.  Ambulance crews work closely with cardiologists at centres around the country and the increased diagnostic functionality of the new machines will enhance the quality of information available to specialists, improving the likelihood of a positive outcome for patients. ”

Health Secretary Nicola Sturgeon said:
“Getting the best possible treatment, at the earliest possible opportunity, is vital when it comes to saving people’s lives.

“That’s why the Scottish Ambulance Service has fitted defibrillators in all their accident and emergency ambulances to ensure that when people need this potentially lifesaving treatment it is available – wherever they are.

“The rollout of the latest technology will help the ambulance service deliver an even better service to patients throughout Scotland.”

The SAS responds to over 33,000 cardiac related emergencies in Scotland every year and currently reaches more than 80% of them in under 8 minutes, against a standard of 75%.

BCS Health Scotland Conference 2010

BCS Health Scotland Conference 2010 NHS Scotland logo

Open for Registrations 22nd and 23rd September 2010

Register now for the most exciting eHealth conference in Scotland this year! Held at the prestigious Glasgow Science Centre you not only have a great programme, wide range of exhibitors, great views over the Clyde and City but complementary entrance to the fun science exhibits as well!

The futuristic building mirrors BCS Health Scotland’s Innovative and Modern outlook See Here

We have an extensive International speaker Programme over both days with three themes held in twin parallel tracks.

Keynote speakers include:

Matthew Swindells, former CIO Connecting for Health, and chair BCS Health

Rikard Lovstrom from Sweden to talk about their National Patient Overview project and eHealth strategy

Dorothy Whittick from Canada talking about the Canadian Health Infoway national developments and a Wellness project in Alberta

Brian Robson from Scotland on the Quality theme and his experiences with IHI in America.

Kathy Dallest from Australia speaking on Clinical Safety Management in eHealth.

New! NHS Scotland eHealth Awards!

An exciting new event will be presentation of the ‘NHS Scotland eHealth Awards!’. These awards are given to winning NHS teams for three categories sponsored by BCS and Scottish Government.

Twin Exhibitions: We are very grateful to our sponsors with 18 commercial exhibitions in a superb bright atrium area and ANOTHER FIRST: 15 public information stands in a separate gallery open to the public. There is plenty to see!

The three main themes to be addressed at the BCS Health Scotland Conference 2010 are Quality, Innovation, and Efficiency. International speakers from Australia, Canada, Sweden, America, Ireland, Wales and numerous UK speakers will position themselves on current relevant issues such as patient safety, the quality strategy, efficiency gains from IT and more.

For the first time, the NHS Scotland eHealth Awards will be presented to eHealth teams in Scotland. These awards will be presented by Scottish Government and by BCS, the Chartered Institute for IT, to help boost the status of the IT profession in NHS Scotland at a time of significant change.

Moreover the new Vidiowiki delegate social networking tool will be used for linking up delegates before and after the event. Users can navigate a mind-map of delegates, speakers and exhibitors to create linkups and watch short clips about presentations and demos. This will help planning and networking before coming to the event.

A selection of posters will be available to view during the conference:

  • A novel security risk assessment model – Napier University
  • Clinical content modeling – NHS National Services Scotland
  • Trans-national exchange of eHealth innovations in northern Europe- Aberdeen University
  • A Study to evaluate the effectiveness of an electronic dashboard – Ulster hospital
  • A Study to evaluate the response times for alerts – Ulster hospital

Around 250 participants are expected to take part in this open event. Online registration is possible here. Details about fees and early bird registration can be found online.

A draft programme for the event can be found online at the event website.

Exhibitors are also leading a fun social evening at 5pm on the first day.

Yet again BCS Health Scotland has been able to produce all this for the incredibly low delegate registration prices starting as low as £30.

So register soon for the early bird rates, find us here BCS Health Scotland Conference

CollaboRhythm – Redefining the doctor-patient relationship

Redefining the doctor-patient relationship – John Moore MD

The doctor-patient relationship is deteriorating. And today’s information technology solutions are exacerbating the problem. They perpetuate paternalistic decision-making and episodic care, and they fail to assist doctors in making persuasive arguments to their patients.

CollaboRhythm is a technological framework that encourages new paradigms in doctor-patient interaction to improve health outcomes and the patient experience. It uses ubiquitous connectivity, collaborative decision-making, and compelling interfaces and visualizations to educate patients, improve treatment adherence, and deliver care at any point in time or space with seamless transitions.

New Media Medicine from nextlab on Vimeo.

Click the link to see the full article about CollaboRhythm – Redefining the doctor-patient relationship

UK better placed than the US to manage chronic disease: lessons from the US

A major new report published today by Healthcare at Home Ltd explores which technologies and models used in the US for chronic disease management could successfully be adopted here in the UK.

The report – Lessons from the US: using technology and homecare to improve chronic disease management – is based on the observations of a US study tour of NHS and Healthcare at Home representatives who visited colleagues in Kaiser Permanente and HealthTech to look at how they use remote technology to manage chronic disease. Whilst they found there to be some exciting hi- and lo-tech innovations and lessons to glean, the group found that the US was not as far ahead in this field as expected.

Ruth Poole, Group Clinical Director, Healthcare at Home Ltd, says: “We were pleasantly surprised to find that the UK is in many ways better resourced and structured than the US to overcome the challenges related to increasing demand for services and chronic disease management. Specialist out-of-hospital care providers like Healthcare at Home Ltd are well established in the UK, and the NHS is already embracing innovation and major transformation in service design in certain areas, but we need to see this progress on a much wider scale if the NHS is to achieve the significant benefits that can be gained.

”The report found that in the “[US] healthcare follows the money, not the population’s health needs. The UK has an opportunity to look beyond this and concentrate on longer term benefits”.

One of the key recommendations is that the move to deliver more care closer to the home has to be underpinned by new models, technologies and systems: “If we simply transplant the same model of care used in hospitals to another setting we will not achieve the changes needed”.

Other reflections and recommendations from the report include:

  • The UK must concentrate on longer-term benefits and consider the population’s health needs as much as the return on investment
  • The NHS set-up allows it to look beyond immediate costs and benefits to start developing more innovative solutions that will lessen the cost of future services.
  • Technologies delivered through everyday devices such as TVs and mobile phones will encourage greater compliance
  • SHAs have access to innovation funds and should therefore take the lead in system development
  • Transplanting the same model of care to another setting closer to home will not achieve the necessary changes
  • Enabling an efficient flow of information between different health organisations is essential to effective disease management
  • Capital investment should not just be about buildings
  • Commissioners need to look beyond their usual providers and pathways and embrace more imaginative commissioning
  • GPs and other primary care staff will play a key role in providing care closer to home
  • The NHS must place more emphasis on managerial analytical competency

The overall purpose of the study tour was:

  • to explore how diagnostics and care are delivered in the home
  • to see how clinical interventions are managed using technology and support workers for increased value, and
  • to glean any lessons for the UK from how the US is addressing these issues.

BMA Scotland warns against victimising whistle-blowers

The BMA in Scotland today [Thursday 13 May 2010] called on the Government to ensure that doctors who raise concerns about patient safety are not victimised by their NHS employers.

The calls came as the BMA published findings of a survey of members Standing up for Doctors; Speaking out for Patients. The survey found that the majority of hospital doctors have, at one time, had important concerns about patient care or staff behaviour. However almost half of these doctors didn’t report their concerns, many because they don’t believe it will make a difference or feared the consequences of doing so.

One in ten doctors who did raise concerns was given some indication that speaking out could have a negative impact on their employment.

Commenting on the survey results, Dr Charles Saunders, Chairman of the BMA’s Scottish Consultants Committee, said:

    • “As clinical leaders, doctors have a duty to speak out when they have concerns. However, as the results of this survey bear out, this is not always possible or effective.

      “We have concerns around the culture of many NHS organisations. Doctors tell us they fear their careers can be affected by speaking out. This is completely wrong. We must move to a culture where every individual in a health organisation can raise concerns that are looked at and acted upon appropriately.

      “The Scottish Government is promoting the concept of a mutual NHS where the patient is at the heart of decision making. But NHS organisations also need to value the staff who are there to deliver and improve patient care. Such a culture change needs to come from the very top. Ministers and NHS Board members need to send a clear message that they want to hear about things they can do better.”

Dr Sue Robertson, Chairman of the BMA’s Scottish Staff and Associate Specialists Committee, said:

    • “Most doctors know and understand that they have a contractual right and an ethical duty to speak out. But many NHS employers make speaking out difficult or dangerous for an individual doctor. Ultimately this will result in staff failing to raise concerns. That is why we are calling for a concerted effort by the NHS to improve on the awareness and implementation of whistle-blowing policies.”

Dr Gordon Lehany, Chairman of the BMA’s Scottish Junior Doctors Committee, said:

    • “Doctors at the very beginning of their career should have confidence in a system that supports them to raise concerns about patient care or staff behaviour. It takes a huge amount of courage and if doctors believe that their career progression could suffer as a consequence, they are less likely to want to speak out.”

The BMA is therefore calling on the Scottish Government and NHS employers to:

  • Raise awareness of whistle-blowing policies
  • Protect the right of doctors to speak out without risk to their employment
  • Provide feedback to staff who have raised concerns about what has happened as a result
  • Involve the medical profession in reviews of national and local guidelines
  • Conduct a retrospective review of responses to cases where doctors have spoken out
  • Encourage and develop a culture of openness within NHS Scotland.

Australian study finds computers are 'better than doctors' at diagnosing serious childhood infections

April 21, 2010 by Jennifer Trueland

A thermometer. <em>Picture: Jurii</em>

Computers are better than doctors at diagnosing serious bacterial infection – such as meningitis – in young children, according to a study published today.

Children, especially those under five years old, commonly have fever or febrile illness, but it can be difficult to ascertain the cause.

This can be vital because doctors have to be able to tell whether a child is suffering from a minor viral illness, or a serious bacterial infection, such as pneumonia, meningitis or a urinary tract infection.

Getting it wrong and failing to diagnose a serious infection and delaying treatment can be fatal – but diagnosing one where it isn’t there can result in children being prescribed antibiotics unnecessarily.

Researchers in Australia developed a computerised model to distinguish between serious bacterial infections and self-limiting non-bacterial illnesses.

The study included more than 15,000 healthy children aged under five who attended the emergency department of a large children’s hospital with a fever (defined as a body temperature of 38C or more in the previous 24 hours).

Doctors performed the usual clinical evaluation and serious bacterial infections were confirmed or otherwise by using standard tests. The signs and symptoms seen by the physicians were combined in a diagnostic model, which was compared to what actually happened in clinical practice.

The data show that of the seven per cent of children who were later confirmed as having a bacterial infection, only 70-80 per cent were prescribed antibiotics at the initial consultation. Conversely, around a fifth of those who were not subsequently confirmed as having an identified bacterial infection were probably given antibiotics when they shouldn’t have been.

In each infection – urinary tract, pneumonia and bacteraemia (bacteria in the blood) the diagnostic model out-performed or was as good as evaluation by a doctor.

Writing in the BMJ, the authors, including Jonathan Craig of the University of Sydney, point out that almost all (95%) of these children had the appropriate tests and that some doctors routinely delay giving antibiotics until test results are known, so this may help to explain the initial under-treatment. However, about two thirds of children who were not treated were subsequently prescribed antibiotics.

They conclude: “By combining routinely collected clinical information into a statistical model, we have demonstrated that a clinical diagnostic model may improve the care of children presenting with fever who have suspected serious bacterial illness.”

Click the link to read the rest of the article about computers are ‘better than doctors’

Click the link to read the full study in the BMJ about the accuracy of clinical symptoms and signs for the diagnosis of serious bacterial infection

Medical and Dental Defence Union says poor handover procedures at shift changes pose a risk to patients.

Shift handover risk to patient

Published Date: 10 April 2010

POOR handover procedures in hospitals pose a “significant risk” to patients, doctors’ representatives have claimed.

The Medical and Dental Defence Union of Scotland said there were now an increasing number of shift changes, following the launch of the European Working Time Directive, limiting the hours doctors are allowed to work.

It said there were renewed concerns of a breakdown in continuity of care as patients were being repeatedly handed over to different shifts. The union is backing a Royal College of Physicians investigation into the issue and wants doctors to report any incidents.

Click the link to read this article about handover procedures

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Scottish Government launches Patient Portal project to give people access to their records

Patient health records go online

Computer and mouse

The portal will allow patients access to records via the internet

A scheme which gives patients access to their own health records over the internet is being piloted at two GP practices in Ayrshire.

The Patient Portal allows doctors appointments and repeat prescriptions to be booked through a secure website.

It also lets patients access their own test results, and track and monitor blood pressure and blood sugar levels.

If the £175,000 six-month trial is successful, it could be extended across the country.

The Patient Portal is being trialled at Townhead Surgery in Irvine and the Kilwinning Medical Practice.

Click the link to read more about patient records