Everyone said, loud enough for the others to hear: "Look at the Emperor's new clothes. They're beautiful! What a marvellous train! And the colors! The colors of that beautiful fabric! I have never seen anything like it in my life!"
A child, however, who had no important job and could only see things as his eyes showed them to him, went up to the carriage. "The Emperor is naked," he said.
The quality of healthcare in the NHS is highly variable.
Some if it is excellent, most of it is average (by definition of course), and some of it is bad.
Some of it is bad.
This last point needs repetition, because unless everybody recognises and accepts this - and keeps talking about it - things will never get better.
Patients and their carers need to talk about it, healthcare professionals (especially doctors) need to talk about it loudly, and providers need to make it their job to talk about the good and bad parts of their services.
Most importantly, but most unlikely to happen, is that the government and Department of Health need to not only accept it, but to shout loudly about the huge and unacceptable variation in quality (outcomes and experience) that the NHS delivers - and to tell every tax-payer whether their local GPs and hospitals are great, average or poor.
However to do this politicians (thinking about forthcoming elections?) have to tell the public that despite huge investment in the NHS:
1. No one can really tell you where or who gives the best care (or the worst)
2. You may be getting care which is unacceptably bad.
Just like MPs expenses, the only thing that will lead to the "root and branch" change essential to improve the NHS is total transparency about variation in quality, and identifying publicly the places (and individuals) that deliver great care, and those that absolutely do not. When done properly, this will allow the power of patients to drive the transformation that the DH, NHS and doctors have failed to do. Of course some of this is difficult, and it will lead to a lot of painful change but that is no reason not to do it.
And if anyone dare tell you that this is already being done, you might remind them that the Mid-Staffs Hospital was rated as "Good" and Monitor allowed it to become a Foundation Hospital - in the years that at least 400 people died unnecessarily on its wards.
What would the child, "who had no important job and could only see things as his eyes showed them to him", say?
Thursday, 25 June 2009
Monday, 22 June 2009
"The days of suffering in silence will soon be over..."
According to the Times. They quote Lord Adonis: "this new requirement gives [users] a direct and much louder voice on whether their needs are being met".
Rude staff, dirty facilities, unacceptable waiting times, provision of information will all now be measured and reported by users themselves - with providers failing to meet standards subject to fines of up to £500,000/year.
Sounds wonderful, and well overdue. However, this is for rail passengers - not for patients and their families.
Interesting to ponder why a government that claims health to be a central priority, decides to give the public power and a voice to help improve standards of trains, before enabling such powerful involvement in improving healthcare and the NHS.
But those committed to improving the NHS do not need to worry of course: the regulation announced by Lord Adonis is an example of the changes that will affect all industries and professions and indeed already has done so for many. The provision of healthcare will benefit more than most sectors by enabling true involvement of users, and harnessing the power and wisdom of patients to help organisations deliver truly great care. Just a shame to see doctors lagging far behind other professional groups in welcoming and leading these transformational potentials.
Rude staff, dirty facilities, unacceptable waiting times, provision of information will all now be measured and reported by users themselves - with providers failing to meet standards subject to fines of up to £500,000/year.
Sounds wonderful, and well overdue. However, this is for rail passengers - not for patients and their families.
Interesting to ponder why a government that claims health to be a central priority, decides to give the public power and a voice to help improve standards of trains, before enabling such powerful involvement in improving healthcare and the NHS.
But those committed to improving the NHS do not need to worry of course: the regulation announced by Lord Adonis is an example of the changes that will affect all industries and professions and indeed already has done so for many. The provision of healthcare will benefit more than most sectors by enabling true involvement of users, and harnessing the power and wisdom of patients to help organisations deliver truly great care. Just a shame to see doctors lagging far behind other professional groups in welcoming and leading these transformational potentials.
Wednesday, 27 May 2009
Standardisation should be standard
As reported by the HSJ, "The Department of Health will not impose standards for “real time” measurement of patients’ experience, despite pressure to use results to help identify failing trusts.
Guidance will be published on the use of fast-turnaround feedback, which many hospital trusts are beginning to collect, in coming weeks.
But there will be no standard collection methods, questions or measures, meaning the results cannot be used for national benchmarking, performance management or patient choice."
Reasons this is the wrong decision:
1. Patients and carers want and need comparative data on experience to guide their decisions and enable informed choice.
2. Only comparative data allows organisations and individuals to see how well they are really doing - or not. Remember, the CEO at Mid -Staffs (and presumably his board and senior medical staff) thought all was well...
3. Great staff want to know how they are performing against their peers across the country - not just down the corridor.
4. Without national standardisation, experience data is close to useless - imagine we allowed infection rates to be reported with each hospital using their own measurement and no way to compare one with the other, or perhaps allowed every surgeon to decide her own scales for success and to report using their "My personal outcome score".
5. It allows mediocrity to hide, and fails to highlight the excellence that others can learn from.
Reasons this decision doesn't matter:
1. Patients and carers will find ways to compare: talking to each other, talking to doctors and nurses, using the internet to share and compare experience.
2. The very best Trusts are already developing ways to compare themselves with other great organisations - great leaders know that this is the only way to deliver excellence.
3. Local leadership and the devolved power of PCTs and Foundation Trusts ensures that organisations which understand quality, and which pay more than lip-service to "patient-centric care", will find ways to deliver comparative data because they understand that without it there is no true choice.
4. iWantGreatCare already allows patients and providers to collect, understand and use true, comparative data in the pursuit of excellent healthcare.
Guidance will be published on the use of fast-turnaround feedback, which many hospital trusts are beginning to collect, in coming weeks.
But there will be no standard collection methods, questions or measures, meaning the results cannot be used for national benchmarking, performance management or patient choice."
Reasons this is the wrong decision:
1. Patients and carers want and need comparative data on experience to guide their decisions and enable informed choice.
2. Only comparative data allows organisations and individuals to see how well they are really doing - or not. Remember, the CEO at Mid -Staffs (and presumably his board and senior medical staff) thought all was well...
3. Great staff want to know how they are performing against their peers across the country - not just down the corridor.
4. Without national standardisation, experience data is close to useless - imagine we allowed infection rates to be reported with each hospital using their own measurement and no way to compare one with the other, or perhaps allowed every surgeon to decide her own scales for success and to report using their "My personal outcome score".
5. It allows mediocrity to hide, and fails to highlight the excellence that others can learn from.
Reasons this decision doesn't matter:
1. Patients and carers will find ways to compare: talking to each other, talking to doctors and nurses, using the internet to share and compare experience.
2. The very best Trusts are already developing ways to compare themselves with other great organisations - great leaders know that this is the only way to deliver excellence.
3. Local leadership and the devolved power of PCTs and Foundation Trusts ensures that organisations which understand quality, and which pay more than lip-service to "patient-centric care", will find ways to deliver comparative data because they understand that without it there is no true choice.
4. iWantGreatCare already allows patients and providers to collect, understand and use true, comparative data in the pursuit of excellent healthcare.
Thursday, 23 April 2009
Engaging the public in healthcare policy: Why do it? And what are the challenges?
“….The development of evidence-informed healthcare policies relies heavily on the hierarchies of research and the technical know-how of experts. However, the experiences, opinions, and value preferences of patients, the general public and consumer advocates also play a legitimate and useful role, especially when difficult, value-laden decisions must be made."
A new paper from the Canadian Health Services Research Foundation highlights how engaging users in health policy decisions increases the public’s trust and confidence in their healthcare system.
If one accepts that "the public holds important health knowledge, but this knowledge should be applied carefully and appropriately", all working in health will be interested to think about how best to capture, analyse and understand such knowledge.
How do you do it? How does your organisation do it?
Monday, 23 March 2009
BMJ: "demand for online health information unstoppable"
Fiona Godlee, the editor of the British Medical Journal, writes this week: "anyone who has been or supported a patient in the past few years will know that medicine finds it hard to shake off its paternalistic tendencies. There is a long way to go before patients truly control the important decisions about their health care."
In the same issue the Chair of NHS Direct, Joanne Shaw, concludes: "Not only is the demand for online health information unstoppable, it should be welcomed and encouraged as good for patients and doctors alike."
Both these statements are so patently true to anyone who has had any interaction with healthcare (as a patient, carer or working in healthcare), and who really understands the many powerful ways in which the internet provides the unstoppable power of disruptive transformation needed to put patients at the heart of healthcare. The real surprise is that the medical profession is only just waking up to what most other industries and professions realised years ago.
The same issue contains an article by the founder of iWantGreatCare, Dr Neil Bacon, describing the evidence base for making the views of patients central to measures of quality in healthcare, and agreeing with Joanne Shaw, that the online route is unstoppable and will provide huge benefits for both patients and healthcare workers.
The very fact that there is today a need for these articles will soon become a quaint museum piece, used by the patients and doctors of tomorrow to laugh at the protectionist, fearful and luddite tendencies of parts of the medical profession to resist the inevitable, in their efforts to protect an out-dated power-base.
The very best doctors, healthcare managers and modern Trusts are already using iWantGreatCare and related online tools and services to better understand and meet the needs of their patients. The rest will follow.
In the same issue the Chair of NHS Direct, Joanne Shaw, concludes: "Not only is the demand for online health information unstoppable, it should be welcomed and encouraged as good for patients and doctors alike."
Both these statements are so patently true to anyone who has had any interaction with healthcare (as a patient, carer or working in healthcare), and who really understands the many powerful ways in which the internet provides the unstoppable power of disruptive transformation needed to put patients at the heart of healthcare. The real surprise is that the medical profession is only just waking up to what most other industries and professions realised years ago.
The same issue contains an article by the founder of iWantGreatCare, Dr Neil Bacon, describing the evidence base for making the views of patients central to measures of quality in healthcare, and agreeing with Joanne Shaw, that the online route is unstoppable and will provide huge benefits for both patients and healthcare workers.
The very fact that there is today a need for these articles will soon become a quaint museum piece, used by the patients and doctors of tomorrow to laugh at the protectionist, fearful and luddite tendencies of parts of the medical profession to resist the inevitable, in their efforts to protect an out-dated power-base.
The very best doctors, healthcare managers and modern Trusts are already using iWantGreatCare and related online tools and services to better understand and meet the needs of their patients. The rest will follow.
Mid Staffordshire - why was nobody listening to the patients?
There are so many ways in which the disaster at Mid Staffordshire hospital should - and must - lead to improvements in patient care, not just locally but across the entire system of the NHS. Whilst politicians and the Department of Health have been quick to claim that it is just an isolated example, the reality is that it reveals an almost total inability of the national monitoring and safety systems to protect the patients who were admitted to the Mid Staffordshire hospital.
The facts are as clear as they are shocking: analysing mortality data for Mid Staffordshire Hospital reveals excess mortality since 2003, yet in the six years since then the Health Care Commission increased the rating for the hospital from Fair to Good and the hospital was given Foundation status - supposedly a marker of excellence in which patients can have complete trust.
To make matters worse, the company monitoring outcomes data only "raised the alarm" in 2007, after they were alerted and asked to look in detail at the mortality information. This would be analogous to an organisation responsible for ensuring airline safety "alerting" the public to problems years after a plane crash that killed 400 people.
So what lessons can be learnt, what changes have to be put in place to ensure that we don't have yet another "one-off" in a few years time, and what role does patient experience have to play in this?
Most importantly, everybody working in healthcare has to listen intently and continuously to the patients. If patient-centric care means anything, and is to be more than just a politically correct buzz-word, it means continuous, detailed and open listening to the voices, experiences and opinion of patients. Patients, their families and carers in Staffordshire had been complaining loudly from 2003 about the shocking state of their hospital and their voices were ignored completely. The Trust itself appears to have dismissed them, and the Healthcare Commission has no system to track and monitor the level of complaints made about a hospital - until the patients themselves complains to the HCC. There is extensive evidence that the perceptions of patients and their experience is an accurate marker of quality standards in hospitals - yet the NHS does not harness what is probably the most accurate, early system of detecting poor quality healthcare: the voices of those using the service. One can only speculate how many lives would have been saved if the NHS systematically incorporated real-time collection and monitoring of patient experience as part of safety and monitoring systems.
"Insanity: doing the same thing over and over again and expecting different results." Albert Einstein
Rather than listen in real-time to the public, the HCC requires patients to be dead before their "experience" activates the systems and alerts. One doesn't need medical training to realise that this might be somewhat too late! However, not only is this a patently ridiculous way to protect patients (akin to a smoke-detector that only goes off months after the house has burnt to the ground), but it also lacks the sensitivity necessary to improve quality across the NHS. As anyone who has worked in a hospital will tell you, things can be very bad indeed before mortality rates increase.
Continuous, real-time, granular monitoring of patient experience has the unique ability to solve some of these problems and greatly increase the sensitivity, accuracy and timeliness of systems put in place to monitor quality and safety of the NHS. We need to make it easy for patients and their carers to not only record their experience, but to ensure this invaluable information is analysed in real-time and provided to Trusts (and the regulators and monitors) in a fully open, transparent way. At the simplest level, all Trusts (primary, acute and mental health) should be required to display the number of complaints they have received, standardised to the number of patients they see, on the front page of their website. Even such a simple thing would help inform the choice that patients now "enjoy", whilst perhaps concentrating the mind of the management. (Perhaps Monitor might even be tempted to look at that number when coming to their decisions?)
The experience of patients has to be a metric and tool that the board and management of Trusts use in the same way that they use data about infection rates: a critical, sensitive and core metric of quality. Perhaps then we might actually get closer to a truly patient-centric NHS.
The facts are as clear as they are shocking: analysing mortality data for Mid Staffordshire Hospital reveals excess mortality since 2003, yet in the six years since then the Health Care Commission increased the rating for the hospital from Fair to Good and the hospital was given Foundation status - supposedly a marker of excellence in which patients can have complete trust.To make matters worse, the company monitoring outcomes data only "raised the alarm" in 2007, after they were alerted and asked to look in detail at the mortality information. This would be analogous to an organisation responsible for ensuring airline safety "alerting" the public to problems years after a plane crash that killed 400 people.
So what lessons can be learnt, what changes have to be put in place to ensure that we don't have yet another "one-off" in a few years time, and what role does patient experience have to play in this?
Most importantly, everybody working in healthcare has to listen intently and continuously to the patients. If patient-centric care means anything, and is to be more than just a politically correct buzz-word, it means continuous, detailed and open listening to the voices, experiences and opinion of patients. Patients, their families and carers in Staffordshire had been complaining loudly from 2003 about the shocking state of their hospital and their voices were ignored completely. The Trust itself appears to have dismissed them, and the Healthcare Commission has no system to track and monitor the level of complaints made about a hospital - until the patients themselves complains to the HCC. There is extensive evidence that the perceptions of patients and their experience is an accurate marker of quality standards in hospitals - yet the NHS does not harness what is probably the most accurate, early system of detecting poor quality healthcare: the voices of those using the service. One can only speculate how many lives would have been saved if the NHS systematically incorporated real-time collection and monitoring of patient experience as part of safety and monitoring systems.
"Insanity: doing the same thing over and over again and expecting different results." Albert Einstein
Rather than listen in real-time to the public, the HCC requires patients to be dead before their "experience" activates the systems and alerts. One doesn't need medical training to realise that this might be somewhat too late! However, not only is this a patently ridiculous way to protect patients (akin to a smoke-detector that only goes off months after the house has burnt to the ground), but it also lacks the sensitivity necessary to improve quality across the NHS. As anyone who has worked in a hospital will tell you, things can be very bad indeed before mortality rates increase.
Continuous, real-time, granular monitoring of patient experience has the unique ability to solve some of these problems and greatly increase the sensitivity, accuracy and timeliness of systems put in place to monitor quality and safety of the NHS. We need to make it easy for patients and their carers to not only record their experience, but to ensure this invaluable information is analysed in real-time and provided to Trusts (and the regulators and monitors) in a fully open, transparent way. At the simplest level, all Trusts (primary, acute and mental health) should be required to display the number of complaints they have received, standardised to the number of patients they see, on the front page of their website. Even such a simple thing would help inform the choice that patients now "enjoy", whilst perhaps concentrating the mind of the management. (Perhaps Monitor might even be tempted to look at that number when coming to their decisions?)
The experience of patients has to be a metric and tool that the board and management of Trusts use in the same way that they use data about infection rates: a critical, sensitive and core metric of quality. Perhaps then we might actually get closer to a truly patient-centric NHS.
Thursday, 12 March 2009
Helping charities harness their members' voices
As reported in the press this week, iWantGreatCare has expanded its pilot programme working with major health charities. Diabetes UK is the first to adopt the programme, with others expected to follow rapidly.
The project will involve iWantGreatCare working with the charities to define what matters most to patients, designing questions that will capture their experience, and then asking them to rate their care using the website or paper-based feedback. The data will then be analysed and fed back to the charity to use in supporting primary care trusts commission services that are fully based on the needs and experiences of patients.
Dr Neil Bacon, who founded iWantGreatCare, said his company is providing its services free to any charity in the UK who wished to harness patient experience as a powerful tool to help PCTs commission care directly shaped by experience of patients. He said: “We want to develop a huge database on patients' experience of care of diabetes. Diabetes UK will use that to talk to PCTs and identify ways to improve the patient journey. This will be patients driving discussions with commissioners and thus shaping services in a truly patient-centric manner.”
John Grummit, vice chair of Diabetes UK, which has more than 170,000 members and is one of the largest patient organisations in Europe, added: “If we can get that momentum going and get that data out there and get that explosion of information used by decision makers it would be a big change.”
Charities are able to find more information, and apply to become partners (free of charge) at iWantGreatCare.org.
The project will involve iWantGreatCare working with the charities to define what matters most to patients, designing questions that will capture their experience, and then asking them to rate their care using the website or paper-based feedback. The data will then be analysed and fed back to the charity to use in supporting primary care trusts commission services that are fully based on the needs and experiences of patients.
Dr Neil Bacon, who founded iWantGreatCare, said his company is providing its services free to any charity in the UK who wished to harness patient experience as a powerful tool to help PCTs commission care directly shaped by experience of patients. He said: “We want to develop a huge database on patients' experience of care of diabetes. Diabetes UK will use that to talk to PCTs and identify ways to improve the patient journey. This will be patients driving discussions with commissioners and thus shaping services in a truly patient-centric manner.”
John Grummit, vice chair of Diabetes UK, which has more than 170,000 members and is one of the largest patient organisations in Europe, added: “If we can get that momentum going and get that data out there and get that explosion of information used by decision makers it would be a big change.”
Charities are able to find more information, and apply to become partners (free of charge) at iWantGreatCare.org.
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