Patient power: threat or opportunity?
Health Secretary's speech on the opportunities offered by the shift to a patient-powered, technologically advanced health service.
I want to talk about the most interesting issue in global healthcare. This is something that I believe we will all be talking about long after new models of care, accountable care organisations or any of the current ‘hot topics’ have long become too normal to be interesting.
I am talking about the inescapable, irreversible shift to patient power that is about to change the face of modern medicine beyond recognition. And I want to talk about how this can ease pressure on frontline doctors and nurses, already working incredibly hard, by creating a stronger partnership between doctor and patient that leads to better outcomes.
Emma Hill, editor of the Lancet, said that every patient is an expert in their own chosen field, namely themselves and their own life. Doctors now regularly find patients who know more than they do about their rare disease in a way that fundamentally changes the dynamic between doctor and patient to a partnership, or even one where the patient is boss. Perhaps the most eloquent exponent of this change is Professor Eric Topol in his latest book ‘The patient will see you now’. He describes it as the death of medical paternalism and the democratisation of healthcare.
These changes are being driven by technology and by our ability to use data differently. And although healthcare has lagged behind the travel, retail and banking sectors in embracing what is possible, we are now on the cusp of changes in modern healthcare that will be as profound for humanity as the invention of the internet. Changes that will be as welcomed by doctors as by patients, given the evidence-based improvements in care that follow when patients take more responsibility for their health outcomes.
It won’t surprise you to know I want our NHS to get there first. It may surprise you, however, to know that with the British people and the government’s strong commitment to NHS values, and the extra £10 billion being invested this Parliament, I believe we are well placed to do so. And it may surprise you even more that I believe that by running faster towards that destination we are more likely - not less - to be able to cope with the huge pressures doctors and nurses face on the frontline now.
Patient power: the future
Last month I met Michael Milken, the Wall Street junk bond trader who went to prison, became a philanthropist and is now a major funder of cancer research. I asked him what advice he would give his grandchildren about how to lead their lives. He said ‘think of the world as it will be, not as it is now’.
So how will the world of medicine look in a decade’s time?
Take people with complex, long-term conditions. Many of them are prescribed a confusing cocktail of medications, each with a different set of instructions which make it easy to forget or mistake doses. So a British entrepreneur living in California has invented a microchip the size of a grain of sand to make these patients’ lives much easier. This chip is attached to every pill you swallow, and is activated by the liquids in your stomach so your phone records exactly which medicines you have actually taken. Early evidence suggests that this could result in significant behaviour change by patients, notably much better adherence to drug regimes. In one study nearly 40% more patients reached their target blood pressure when using the digital pill.
Or think about those suffering from mental illness. An app called Ginger has now been developed which advocates say can detect depression or suicidal tendencies with greater accuracy than a psychiatrist. Without even being opened, this app monitors whether you got out of bed, if you skip a meal and if you are texting or calling friends in line with normal social activity. By tracking what an average day looks like for that patient, the app detects deviations from the norm and alerts clinicians or relatives when they should check in to see how you’re doing.
Or take a child with earache. At the moment his or her parent has to book an appointment with a GP, travel down to the surgery, and get their child’s ear checked for infection with an otoscope. But now entrepreneurs have developed a simple attachment for an iPhone which can take an incredibly powerful and accurate picture inside someone’s ear. This means with 2 clicks the parent can send an image to their doctor and with e-prescriptions and home delivery, the problem can be rectified without stepping outside your home. Time and money are saved, and that family’s consumer experience is revolutionised.
In some ways this is just the onward march of modern technology finally taking place in healthcare. But these changes are doing something more: all of them are giving patients much greater control of their own healthcare and responsibility for their health outcomes.
Opportunity for doctors
Is this good or bad for doctors?
US health-tech entrepreneur Vinod Khosla says that soon we will never ask a doctor for a diagnosis. Somewhat provocatively he asks why would you trust a human brain to make a judgement when a single drop of blood contains 300,000 biomarkers that can be analysed by a computer before you even have any symptoms. More likely than his prediction is a partnership between a doctor’s judgement and the information provided by data analysis: while the best computer chess programme can now beat the best human player, it has not yet defeated a human working in partnership with a computer.
That partnership will seem blindingly obvious when it happens.
Like the transition in tennis from depending on linesmen at Wimbledon to using Hawkeye, the move to the ‘quantified self’ in medicine presents a huge opportunity to improve the quality and accuracy of a diagnosis. Perhaps the most high profile example of this is Angelina Jolie choosing to have a double mastectomy after genetic sequencing. But it is also clear that in an era of chronic conditions, when patients take responsibility for managing their condition, the outcomes are better. The Expert Patient Programme showed that, after training patients to self-manage conditions, 40% felt reduced pain, tiredness or breathlessness within months; and some reported a reduced use in NHS services such as GP consultations and hospitals visits. Likewise when it comes to lifestyle decisions like obesity or relating to smoking, doctors cannot be held responsible. But working with patients who are prepared to take responsibility, they can transform life chances.
No one disagrees with this – so now it is time to move away from the ivory towers of theory to the gritty job of implementation. Today I will therefore talk about this government’s plan to make this happen and the 4 elephant traps we need to avoid in the process. But first let’s look at our progress to date.
NHS progress to date
Over the last few years we have been pursuing an ambitious digital strategy in the NHS. Three years ago I – perhaps foolishly – said I wanted the NHS to go paperless by 2018. I am sure someone somewhere will be able to find a lone sheet of paper in use in 3 years’ time, but the spirit of that ambition remains alive and well, not least thanks to the inspirational leadership of Tim Kelsey and his team and NHS England.
For example last year the number of GP practices offering access to summary GP records rose from 3% to 97%. And in the last 2 years the number of practices offering e-booking and e-prescribing rose from 45% to 99%. Take-up by the public is still lower than we want, but from April next year all patients will be able to access their full GP electronic record and not just a summary. By 2018 this record will include information from all their health interactions across the system and by 2020 it will include interactions with the social care system as well. By then patients will not just be able to read their medical record but add their own comments. They will also be able to link it to wearable devices like Fitbits or Jawbones.
As important as the improvements in clinical care that come from electronic health records is the cultural change that comes from transparency. In January, the World Wide Web Foundation ranked the UK first in the world for open data, which includes a health category. Similarly, Professor Don Berwick of the world renowned Institute for Healthcare Improvement, has commended our ‘serious commitment to evolving the NHS as a learning organisation committed to the never-ending pursuit of safer care’. [describes slide]
From a standing start a year ago, the new MyNHS website has drawn together outcomes and performance data across the whole health and care spectrum, from individual consultants, GP surgeries and dentistry practices, to care homes, hospitals and mental health facilities. The site now holds 700,000 individual pieces of performance data and has been visited over 300,000 times – with many of those via the BBC! We now have a new-look MyNHS with much more user-friendly functions, and we will continue improving it to help drive this consumer revolution in our NHS.
But we didn’t stop with a new website. There’s now monthly publication of ‘never events’; some 10.5 million responses to the Friends and Family Test; the new duty of candour; the new ‘no-blame’ patient safety investigatory service, IPSIS; CQC ratings by hospital department; GPs soon telling patients about local hospitals’ CQC ratings to inform referral choices; Sir Bruce Keogh’s review of the professional codes to ensure people are able to report openly and learn from mistakes; and from next March the publishing of estimated avoidable deaths by hospital.
I said in July this kind of intelligent transparency would not just empower patients, but could also help make the NHS the world’s largest learning organisation.
But while we can be proud of our progress in building a patient-focused culture, for anyone who believes in the NHS as passionately as this government does there is still much work to do. We still put too many obstacles in the way of doctors and nurses wanting to do the right thing; bureaucracy, blurred accountability and a blame culture are still too common.
So here are 4 ‘elephant traps’ that we need to avoid followed by some areas where we need to go further and faster to harness the opportunities offered by empowering patients.
1 The bureaucracy trap
Surely people say technology will help to reduce bureaucracy by eliminating repetitive form filling? Not in parts of the US. While thanks to President Obama’s Health Information Technology for Economic and Clinical Health Act, the US has gone further and faster than most countries in digitising hospital records, this change has met huge resistance from doctors because of the extra burden that can reduce contact time with patients. Put simply for many doctors it feels like screen contact has replaced eye contact.
One recent US study videoed 100 patient visits and found doctors were spending around one third of the time looking at their screens. Another found that emergency room doctors spend 40% of their time filling out online forms and just 28% with patients. An emergency department in Arizona tried to attract applicants by stating on the advertisement that they had no electronic medical records. This was a selling point for the hospital. In the UK, some think the new IT system at Addenbrooke’s helped tip it into special measures.
The lesson here must be to ensure that new IT systems improve rather than reduce clinician productivity – so that it helps rather than hinders them in their jobs. Professor Robert Wachter of the University of California San Francisco says this means understanding that the digitisation of healthcare is about ‘adaptive’ change rather than just ‘technical’ change – a change in behaviour rather than just a new process. And I will discuss later the need to get this right in general practice as well as hospitals.
2 The accountability trap
One of the best reasons for investing in digital records is to allow communication between multi-disciplinary teams in different organisations for patients with complex needs. But by making cross-team and cross-agency working easier, there is also a risk that accountability to the patient is blurred.
Let me read you a line from a recent report about a tragedy in our NHS: ‘Assurance had become circular. The CQC was taking reassurance from the fact that the PHSO was not investigating; the PHSO was taking assurance that the CQC would investigate, the SHA was continuing to give assurances based in part on the CQC position. Monitor asked for assurance and received the perceived wisdom.’
Now let me read you a line from a completely different report about a different tragedy: ‘There was a systemic culture where organisations took inappropriate comfort from assurances given by other organisations. As a result, organisations often failed to carry out sufficient scrutiny of information, instead treating these assurances as fulfilling their own, independent obligations’.
That was Morecambe Bay and Mid Staffs respectively, perhaps our 2 greatest healthcare scandals in recent history, with more in common than we’ve cared to admit. One of the biggest lessons that I have learnt in my time as health secretary is that if the buck stops with 6 people, it stops with no one. Technology should allow easy communication with the person responsible for your care. But what if no such person exists? We must never let shared records become an excuse for diluted accountability or the lack of a personal touch, which is why the work done by the Academy of Medical Royal Colleges about clinical accountability outside hospitals is so important. I am delighted that guidance has been published today.
3 The cost trap
Computer systems are expensive. They can also be a total waste of money. Just look at the Connecting for Health catastrophe. £9 billion over 10 years came to virtually nothing in our biggest ever IT disaster. While all such investments have the right intentions, many in practice divert resources away from frontline care. And often the investment was targeted at improving organisational convenience rather than patient experience. The lesson here is surely that incremental improvements closely tied to clinician productivity and patient experience are as valuable as big bang changes which carry much greater risk.
4 The data security trap
We need to be honest. None of this – none at all – will be possible if the public do not trust us to look after their personal data securely. Remember Vinod Khosla’s 300,000 biomarkers in a drop of blood? But who will send their sample to a laboratory if they are worried about the security of highly personal information? The plain truth is that the NHS has not yet won the public’s trust that it is competent in protecting basic personal information. Hospitals, GP surgeries and social care organisations do not yet all have proper data security protocols in place. So the new data guidelines being developed by Dame Fiona Caldicott, our National Data Guardian, as well as the CQC’s review will be vital.
Let’s be ambitious when it comes to technology – but let’s be humble as well. We haven’t always got this right, especially when it has interfered with rather than enhanced the relationship between doctor and patient.
So I am delighted to announce today that Professor Robert Wachter, not only UCSF Professor but also author of The Digital Doctor and a world expert on the promise and pitfalls of new IT systems, will conduct a review for the NHS on the critical lessons we need to get right as we move to a digital future. He will guide and inspire us as Professor Don Berwick did on safety and we look forward to receiving his report next summer.
Five point patient power plan
Four elephant traps to avoid – and 5 suggestions where we need to go further to make a reality of patient power. Because we have already started this journey these 5 points are more about plugging some gaps in the architecture and making sure we square the opportunities ahead with the significant financial and operational pressures we face. But if we plug those gaps and stick to the plan I am confident as promised in July - we really can make NHS patients some of the most powerful in the world.
First we need to plug the transparency gap. We publish more information than anywhere else, but we need to go further, and ensure that we have truly intelligent transparency. That’s why the King’s Fund report on CCG accountability is so important. I can announce today that we are pressing ahead with these changes in accordance with their advice. Chris Ham advised us that aggregated ratings were only possible if human judgement was used to interpret the data we have, so NHS England will provide ratings of all CCGs, similar to the ratings that Ofsted and the CQC provide in the following categories: outstanding, good, requires improvement, inadequate. This will have that element of human judgement that the King’s Fund advised was important and will help people have a good sense of the quality of healthcare provision in their area and how it compares to other localities.
By June next year we will publish these – both as an overall rating, and for cancer, dementia, diabetes, mental health, maternity and learning difficulties. In line with the Kings Fund recommendations, the ultimate judgements for these ratings will be made not by algorithm but by expert committees. I am delighted to announce the names of the people chairing two of these expert committees today: Harpal Kumar of Cancer research UK for cancer and Paul Farmer of MIND for mental health. The overall CCG rating published next June will use 2015-16 data and be informed by the current NHS England CCG scoring methodology.
However under Ian Dodge’s leadership NHS England will be developing a new methodology based on the wider responsibilities CCGs now have for their local health economies. Ian will consult with CCGs on this so that the new methodology is in place from the start of the next financial year, to inform the next set of ratings published in June 2017. We will also to do more to ensure the public get clear information about the quality of their local GP surgery, informed by the Health Foundation’s work. We should not underestimate the boldness of publishing these ratings. This has never been done anywhere else in the world.
Secondly, we need to tackle the accountability gap that I touched on earlier. How can patients be truly in control if they don’t know where the buck stops for their care? We’ve made good progress on this front with the introduction of named GPs, names above the bed in hospitals, and the Academy report into named responsible hospital consultants. We’re now going further, and hard-wiring the principle of named, responsible clinicians into planning guidance next year. Today’s report from the Academy of Medical Royal Colleges will be another big step forward as I mentioned.
Thirdly we need to tackle the time gap. Patients will never be powerful if we do not give their doctors enough time to listen to them. Managers will never make the right decisions if they do not have time to listen to their own frontline staff. We need to think about this across the system, but today I am announcing a 4 point NHS England plan to help one group in particular: GPs.
Firstly, by cutting down on the ludicrous amounts of time they have to spend chasing different organisations for payment by allowing everyone access to GPs’ own payments system. Secondly, to stop the pointless referrals from hospitals back to GPs when they miss an appointment – a total waste of professional time that accounts for around 3% of all GP appointments. Thirdly, we must make general practice truly paperless by 2018. Embarrassingly someone told me that we believe the NHS is currently the world’s largest purchaser of fax machines.
Finally, we need to support GPs to innovate locally across organisational boundaries. Today an independent review on the PM Challenge Fund has shown a statistically significant 15% reduction in minor self-presenting A&E attendances by patients at those practices. This is family doctoring at its best: keeping people happy and healthy outside hospital.
Next, a patient-centred system needs to ask whether it really is really giving patients choice and control over their care at every available opportunity. So we will continue to explore ways to increase choice in maternity, end of life care and the roll out of personal budgets, where NHS England has promised plans before the end of the year.
Finally, and most difficult of all, we must continue to tackle the culture gap which still acts as a barrier to putting patients first. Professor Sir Mike Richards frequently expresses astonishment at the variations in care he has found in NHS hospitals - much greater than he anticipated, with world class hospitals like Frimley and Salford Royal alongside 22 hospitals which sadly have had to be put into special measures. The CQC say this variation is not principally about money, challenging though the current financial situation is, but about leadership and culture. People become doctors and nurses because they want to do the right thing for patients. But too often a defensive culture makes them pay too high a price for speaking out if they think they have made a mistake or seen others making a mistake. We must accept that there will always be mistakes, sometimes with tragic consequences. But the overwhelming patient interest is in an open and transparent culture that learns from those mistakes and stops them being repeated.
And that patient interest is served not just by eliminating variation between hospitals – but within them as well. A patient-centred system cannot justify mortality rates 15% higher for those admitted on a Sunday compared to those admitted on a Wednesday. Hospitals must be allowed to roster according to patient need – and to those who point to low morale as a reason not to change this, I simply say the highest morale is almost always found at the hospitals that are best at looking after patients. There is no conflict between a motivated workforce and a patient-centred culture – on the contrary the overwhelming evidence is that they go together. So we must challenge those who resist improvements that put the patient interest first with the utmost vigour.
Technology in healthcare should never be an end in itself. It must be about improving the safety of your baby’s delivery, accurately identifying if you’re having a heart attack, or diagnosing your cancer more quickly. But most of all it must be about control – about moving away from a culture when you ‘get what you’re given’ to a democratic culture where for the first time in centuries of medical history the patient really is the boss. Both the tech optimists and the tech sceptics have plenty of evidence to use. But I am unashamedly one of the optimists. When it comes to the coming changes in healthcare, it’s not man versus machine, it’s what man and machine can accomplish together. And to that there really are no limits.