"We need an NHS that gives all of those with long-term or chronic conditions the choice of greater support, information and advice, allowing them to play a far more active role in managing their own condition in partnership with their clinicians.
And even when healthy, we know all of us will benefit from earlier information about potential health risks and advice on how we can keep ourselves fit and well.”
Prime Minister Gordon Brown’s New Year message on the NHS.
The Prime Minister’s New Year message about patient information wasn’t startlingly new, but it was interesting to hear a view about the importance of information from such a senior politician and a welcome signal that patient information is rising up the health agenda.
Information and communication technologies (ICT) are bound to play a central role in delivering that agenda, but views on the formats to be used and the mode of delivery present a diverse picture.
Sir Muir Gray, chief knowledge officer for the NHS, describes his vision of healthcare in this way: “Muir Gray has familial hypercholesterolaemia. Every six months he receives an email reminder from the lab to have a blood test. He receives two SMS reminders if no blood sample is received within two weeks. If no specimen is received his GP receives a copy e-mail. If there is a result it is sent to the GP and to his HealthSpace where it is stored in sequence. Appropriate advice and support is automatically generated.”
Patient access to records
For some doctors the key to delivering information to patients in beneficial way lies in patient access to health records.
In Dr Amir Hannan’s practice in Hyde, Cheshire, more than 300 patients view their records over the internet. Patients can see their full consultation record and use websites such as www.labtestsonline.org.uk and www.besttreatments.bmj.com to find out more.
Dr Hannan says: “My experience with patients is completely different when they are accessing their own records. I also come across the harm that results when information is not available, for example one of my patients stopped taking a medicine because they hadn’t been shown the information that they are on gold standard treatment that is keeping them alive.”
Dr Richard Fitton, a GP in Derbyshire, has also enabled his patients to access their records over the internet and is an advocate for the power of providing health information to patients. He says: “The average person has four consultations a year of 10 minutes each. We do our best but it’s just not possible to cover everything in that time.”
In a recent paper Dr Hannan argues that record access createsrecord access creates a ‘paradigm shift’ in healthcare but also throws up challenges including issues of consent and confidentiality.
These are issues familiar to the Department of Health (DH) as it develops the Summary Care Record and HealthSpace, potentially providing a record summary that can by accessed online by patients and clinicians anywhere in England or even, with patient permission, the world. At the same time a private company in the UK is offering patients the chance to access their records via a USB ‘smart card’.
Information for long term conditions
As well as improving universal access to information Brown wants to target information at the 17.5m patients in the UK with long term conditions (LTCs).
A Picker Institute Europe review into patient focused interventions looked at the impact of patients using technology to receive health information. The conclusions of Angela Coulter and Jo Ellins were that health knowledge mainly improved although there were mixed results. There was high user satisfaction with beneficial effects on health behaviour particularly with web-based educational interventions and benefits on involvement in decisions and confidence in doctor-patient consultations. There was some evidence of greater benefit for under-served groups, but the authors said older people might find access and use more difficult and that harm may be under-reported. Clinical outcomes improved with interactive health communication applications.
Information for motivation
An obvious example of interactive health communication applications are telehealth devices. From April the DH’s Whole System Demonstrator project will install telecare and telehealth devices in around 7,000 homes, to assess the impact of assistive technology both on people’s lives and on the cost of providing care and support.
Decision support software supplier Clinical Solutions has developed its Long Term Conditions Management (LTCM) solution to motivate patients with chronic diseases to self help and support healthcare providers. The solution combines clinician input with telephone support and tailored software designed to manage specific conditions like chronic obstructive pulmonary disease (COPD) and diabetes. Patients are encouraged to structure their own care plan and it can also link with telehealth or telecare monitors.
Ian Moody from Clinical Solutions says the company is ready to pilot the solution with UK customers. He adds: “Studies in Australia and America have shown this kind of support actually makes a big impact both in terms of improving the patients’ quality of life and reducing the risk of hospitalisation.”
Technology is also being deployed to identify those with LTCs who would benefit from such interventions. Health Intelligence’s product CDR Intel takes data from hospital and GP systems to identify patients, generate individual health profiles and provide a population-based view of what is happening.
Philip Kirby, director of Health Intelligence, says the system will soon be providing health profiles for 12,000 patients in Walsall with New Deal for Communities funding, an initiative designed to tackle deprivation in the most deprived neighbourhoods in England.
The information prescription
The US has led the way on what is describes in the use of “information therapy”, and the DH is following suit with the introduction of information prescriptions, pointing patients to relevant websites, resources and support groups for their condition.
The DH goal is to roll out information prescriptions to all patients with long-term health and social care needs in 2008. The interim report on the pilot sites said that IT has a potentially significant role to play but its use by individual sites had been comparatively limited.
Mark Duman, president of the Patient Informatiom Forum, says it is is ironic that while Connecting for Health works on an Electronic Prescription Service to dispense prescriptions for drugs, another part of the DH is focusing on producing information prescriptions in paper form.
Duman sees technology playing a significant role in information provision over the next few years and wants to see improvements in projects such as NHS digital TV which he describes as “dull and boring with flat content”. He hopes for a future in which homes have one set top box to provide not just access to television but also health information and telehealth services, where mobile phones become your “health buddy” and where web 2.0 technology is harnesssed for patient information.
Patient networking
He adds: “Sites like Patient Opinion, Horsesmouth and the Voices section on NHS Choices are showing that everyone is a publisher now. The definition of evidence is changing to an accumulation of experience and if we don’t watch that and integrate it into our discussions it will be at our peril.”
This view was also articulated by Conservative leader, David Cameron in a speech on the NHS’s 60th anniversary. He said: “So much medical knowledge is being created by patients themselves. The experiences of patients can be distributed horizontally, from patient to patient, through online networks, rather than vertically as before through doctors and hospitals.
“I’ve done it myself. If your child is ill, as soon as you hear the name of their condition, you get home and Google it on the internet.
“You join the international support group. You pick up ideas about drugs and treatments. All too often you then bombard your doctor with questions about these things – but often these are the right questions to ask and sometimes you might even pick up an idea before they do.”
UK governments have invested heavily in health helplines through NHS Direct and NHS24 and the DH is currently offering a £60-£80m contract to run its flagship website NHS Choices. Suggestions that such initiatives are “care on the cheap” are rejected by Dr Hannan and Duman who argue that it will be never be possible for every patient to have an immediate appointment with a professional when they want one. Health information and support provided by technology will supplement rather than replace interaction between patients and professionals.
Brown’s information agenda is not a new one for the NHS. In 2004 the government declared that information was central to health in Better Information, Better Choices, Better Health and it was a theme again in the 2006 white paper Your Health Your Care Your Say. The challenge remains to use technology to deliver the right information, in the right place, at the right time.
Fiona Barr