May you live in interesting times, warns the Chinese curse. So what are we to think of Health Secretary Jeremy Hunt’s prediction: “We think that over the next three years Britain will become the most interesting country in the world when it comes to health technology”?
Hopefully he isn’t planning a repeat of the creation of the 2004 NHS National Programme for IT which was set up to build the world’s biggest civil information database. Many spent the subsequent seven years watching that behemoth crunch numbers, careers and cash as it lumbered towards its planned single, centrally mandated electronic care record for patients, which promised to connect 30,000 GPs to 300 hospitals. Two years ago, after a cost of some £12 billion, the scheme was scrapped, having failed even to hook up with all NHS trusts.
Yet, there is no doubt relying on paper records simply will not do in a world where patients move home frequently, travel for treatment, rarely see the same doctor and expect much higher quality care. One example of risk caused by paper records is patient safety. Deaths caused by prescription errors at NHS hospitals could be reduced or eliminated if prescribing doctors could easily access patients’ full medical history.
Mr Hunt has pledged that not only will he get our medical records online, but we will all have full access to them by 2015 or by 2018 if treatment also involves social care.
Professor Sir Bruce Keogh, medical director of NHS England, says of the plan: “Supporting hospitals to replace outdated paper systems for notes and prescriptions will help relieve patients’ frustration at having to repeat their medical and medication history over and over again, often in the same hospital, because their records aren’t available. Expanding the use of electronic prescribing of medications in hospitals will help improve safety, save lives and save taxpayers’ money.”
Think this is just ambitious hype? In some corners of England and Wales, a revolution in access to patient information has long been underway, without fanfare.
In Hyde, Cheshire, GP Dr Amir Hannan is checking his computer to see how a patient with high blood pressure is doing. The online records he uses are efficient and he can see a comprehensive patient history, and the latest monitoring test results.
Using FaceTime for mental health work is a way of reducing waiting times for counselling and cognitive behavioural therapy
Fairly unusually, however, Dr Hannan’s patient is doing the same thing, at the same time – sharing access to his own medical records from a home computer. If either party is worried about a reading or symptom, they can type those concerns into a comments box, allowing for communication which is far outside surgery hours. Dr Hannan can also use the online information to book a consultant referral for his patient, or a new round of tests, and as a starting point for educating his patient about their condition.
Dr Hannan’s practice is ahead of the national curve, just one of about 100 practices to offer open access, in part due to curious circumstances. The GP joined just as the community’s long-standing local doctor, Harold Shipman, was charged with the mass murder of 15 patients, with as many as 250 deaths possibly ascribed to him. It was a community in shock, which needed transparency more than anything else from its local healthcare services.
Now 13 years on, the past six of which have seen open access to patient records, and the practice is thriving.
“We make huge efficiency savings through improvements in quality and productivity,” says Dr Hannan. “But the scheme’s real success is that it builds a partnership of trust between doctor and patient. I may be the doctor, but the patient is also an expert in their own condition and together we can take advantage of online tools to decide best treatment.”
These include Choose and Book (the NHS system which allows patients to decide where to go for referral), Map of Medicine (which gives access to comprehensive, evidence-based guidance, to improve clinical decision-making) and PROMS (Patient Reported Outcome Measures, which assesses the quality of care delivered to NHS patients from the patient perspective).
Nearly one in five patients in Hyde have signed up to access their own medical records and the number increases significantly in chronic conditions – 50 per cent of those with immunosuppressant conditions have access, for example.
The idea is certainly gaining ground in the United States where the Open Notes movement is taking off. Clinicians and patients are agreeing to share access to their notes with positive results. More than 60 per cent of patients who trialled the scheme reported doing better taking prescribed medications, with more than 77 per cent saying they felt more in control of their care.
Mindy Daeschner is a director of psHEALTH, a bespoke software provider for healthcare companies, such as Bupa, looking to build smarter systems so their staff and patients can interact better and more efficiently. Crucially, the company encourages the use of the cloud for software provision and data storage.
“Using the cloud for our health solutions, including patient records, makes our systems more agile and user-friendly,” she says. “But we also have full confidence in safety. And all our communications are data-encrypted to the highest level. We’re well aware that this is the most precious type of data because it relates to people’s lives.”
As for GPs feeling vulnerable, perhaps that is no bad thing either. As long as care is correct and professional, open access to patient records shouldn’t be feared.
Moreover, there is so much that innovative IT could bring to healthcare. Dr Sarah Hull, a GP in Surrey, is a specialist in dermoscopy. In addition to her usual patients, she examines 500 cases of potential skin cancer from around the country every month using a system called TELEDerm. GPs who are concerned about a patient’s mole, but who do not have specialist training, can take a picture using a dermascope – a hand-held magnification device and camera that uses polarised light to show up changes to the structure of the skin, which are impossible to see with the naked eye – and send it via their computer to approved experts such as Dr Hull.
“I view the lesions and make a diagnosis using a patient history – age, family history of melanoma, any time lived abroad, changes in shape and size of the mole, how many moles they have. Then I send my conclusions back to the GP, who can decide how to progress. The photos are very good quality; the service is entirely confidential – I never see names and faces are blurred out – and we know it is saving a huge number of referrals to dermatologists.”
We are world leaders in primary-care computing, but in our hospitals – secondary care – it’s a desert
And money. A TELEDerm diagnosis costs £25 compared to a specialist referral which costs £125, so the NHS saves £100 per patient or approximately £40 million each year in avoidable referral costs. About 12 to 13 Clinical Commissioning Groups (CCGs) are now using the technology, with many more planning to enrol this year.
Dr Hull thinks there are other areas of general practice where this type of distance care may be useful. She cites the possibility of using FaceTime for counselling and mental health work as a way of reducing waiting times for counselling and cognitive behavioural therapy.
Perhaps the greatest challenge, says Glen Griffiths, a Berkshire-based digital healthcare specialist, is not in your local surgery. “We are world leaders in primary-care computing – every GP has a computer, records, support tools,” he says. “But in our hospitals – secondary care – it’s a desert. It’s so inefficient; we have to look at what systems support better care there.”
Renal Patient View is a model system for patients where maintaining health demands regular monitoring, including proteins in urine and blood sugar levels, and where patients’ condition may change rapidly.
“This programme has been embraced by the profession and patients, with 50 per cent of renal patients using it,” says Mr Griffiths. “Doctors and patients can go online at any time, access latest results, check specimens, monitor readings, such as blood pressure, which the patient can supply. And it reduces the number of hospital appointments while clearing the way for fast emergency responses. I think of it as helping patients to project manage their own conditions.”
But what of the high-risk patient groups, such as the elderly or less-well-off, who often have reduced access to the internet and could risk falling behind?
Dr Hannan says: “It comes down to the will in the practice to make it happen. Here, we have 15 per cent of Bengali patients, often with poor English, subscribed. Our patients with learning difficulties are also getting full access and using it. It’s up to us to reach out to them and it can be done. We have to put in the right amount of support.”
Ultimately the success of the new plans will come down, perhaps as it always does, to the people involved. “This is not a debate about open data,” says Dr Hannan. “It is about relationships between people. We can help to release and activate the patient – empower them. That must be a good thing.”
People not PCs are still the future of healthcare it seems.