How can patients (or the NHS) know what is going on in hospitals?

“Hundreds of patients died at an NHS hospital after suffering appalling standards of care.“
Conditions described as “third world“.
Four hundred avoidable deaths in a single year.
These are shocking headlines and each one represents an awful personal tragedy to families. But of course they are just the tip of the iceberg. For each patient that dies unnecessarily, there will be many, many more injured, damaged and poorly treated.

Unfortunately the only people who seem to be surprised by this are the government and their regulators the Care Quality Commission (CQC), which described the Basildon and Thurrock University NHS Hospitals Foundation Trust as “good” just last month - indeed patients using the Care Quality Commission website to help them choose great care will see that assessment there today.


Despite all the noise around Bristol a decade ago, and Mid-Staffordshire just this year (“up to 1,200 avoidable deaths“), and despite promises that “this will be the last” - patients still have no way of knowing whether they and their families are being treated in safe, efficient, caring hospitals.

But real questions need to be asked about what the staff at Primary Care Trust in Basildon were doing during this time? The PCT has been commissioning care from the Basildon and Thurrock University Hospital and sending patients to a dangerous and (according to the Royal College of Nursing) “third world” hospital. The PCT is supposed to be the advocate of the patients, to take into account the experience and preferences of patients in all their commissioning decisions and to only choose care which delivers high quality and excellent experience. Why did the PCT not know what was going on just down the road?

Of course the reason that the PCT had no idea what was going on in Basildon is the same reason that most PCTs and the CQC have no clear understanding of the quality of care delivered by Trusts across the country. If you keep using the same, outdated, disproved methods and approaches for measuring quality you will keep getting the same results. Archaic systems of annual reviews, self-assessment with internal review at Trusts, and sending in CQC inspectors after people have died is unacceptable and would not be allowed in any other industry.

So what is the answer? The CQC, PCTs and government have to move to completely new ways of assessing, monitoring and understanding quality and safety. Existing systems are broken, do not work and provide (as Basildon so clearly shows to even the most casual observer) false reassurance.
The experiences and opinions of patients have a central role to play here. It is known that patient experience is a powerful way to monitor the quality of care delivered by hospitals. This needs to be captured on a huge scale and in a fully transparent way. This has to be done systematically, continuously, in real-time and in detail across all of health and social care. No individual or organisation delivering care should be free from such scrutiny and the system must be standardised to ensure comparable data are available - this is the only way to rapidly identify outliers without having to wait until their patients die unnecessarily for the investigations to begin.

Other sectors have shown us the way: harnessing the wisdom of crowds by using “armchair auditors” in a systematic, structured way will allow the truth about quality in the NHS to be laid bare for all to see. Who will be brave and honest enough to uncover the reality?

What’s so good about the NHS?

“When the NHS is working well, its service is excellent”, says Chris Bond in the Yorkshire Post this week. Well done to all the staff at Leeds General Infirmary for delivering great care.

He recounts a story of his minor illness and how it highlighted (to his surprise) the excellence within the NHS. The author talked to Dr Shaibal Roy (Managing Director of iWantGreatCare) about this experience and how understanding the input of patients is at "the centre of care" because it helps staff to understand what patients want and where they can improve.

"Understanding the human aspect of hospital care isn't new, but I think the idea of harnessing it and trying to get feedback from every patient definitely is. It's not about being touchy-feely, but if you engage with a patient, if you get them involved and treat them with respect and dignity then they are more likely to listen and follow what the doctor, or surgeon says." says Dr Roy.

Above all, he says, the experience of patients is crucial. "Whether people are being treated for an injured finger or a life-threatening illness, we want to make the kind of experience you had routine, we want everyone to get that level of care and that's the challenge."

An elegant explanation of how iWantGreatCare helps patients, doctors and organisations.

Milton Keynes doctors highly rated

Today Heart 103.3 reports that iWantGreatCare has partnered with the local NHS to allow the public in Milton Keynes to give web-based feedback and reviews about their local doctors. All patients and their carers in and around Milton Keynes are able to visit iWantGreatCare’s website and provide direct, honest views about the care their GP gives.

The realtime opinion of patients goes directly onto the web and can be used by others looking for the very best GPs. It is also shared with the doctors themselves to help continuously improve the experience they deliver to their patients and constantly drive up the quality of services in the area. The doctors of Milton Keynes are innovative leaders, who are setting new standards in openness and communication with their patients.

Milton Keynes is the only PCT in the country where patients can see detailed, honest feedback such as this on those who care for them.

Finding great GPs and fantastic hospitals

[Today's announcement by the Health Secretary will be of interest to all those using, following, or already working with, iWantgreatcare. As you are aware, the iWantgreatcare service is the only way for the UK public to get information on individual doctors to help them choose great care for themselves and their families.]

As Andy Burnham said today, the NHS is good, but needs to be great.

In fact, much of the NHS is not even good - but parts of it are fantastic.

Harnessing the experience and views of patients and their relatives is the key to driving out the poor, building on the good, and identifying the fantastic - this is the central truth underpinning iWantGreatCare.

But today's speech by the Secretary of State is important in announcing the overdue policy change that will allow the power of patients to drive the quality improvements that can make the NHS great. By giving patients the ability to choose who cares for them, and by linking hospital budgets to patient experience, those delivering care who do not focus on the total satisfaction and experience of their patients will be exposed, will lose patients and will lose funding. They will improve - or be replaced by better services, delivering better quality care.

With free choice over who cares for themselves and their family, patients will seek out the information to make informed decisions. NHS Choices, iWantGreatCare and others will meet this need, empowering patients and allowing them to find truly great care. Indeed, the thousands of patients already using iWantGreatCare shows the scale of public demand for transparent, independent knowledge about the quality and experience of healthcare - and the unique way in which users value the views and experiences of their fellow patients.

The best NHS Trusts, doctors and hospitals know this already and are using new ways to capture, understand and use patient experience to improve quality, reduce costs and ensure total focus on the needs of their patients. iWantGreatCare already works with some of the UK's most innovative healthcare providers; NHS Trusts who know that continuously capturing and understanding real-time patient experience from thousands of users, every day of the year, across all the services they deliver is the key to quality improvement. These are organisations not afraid of the suggestions and criticisms of users, but who actively encourage and facilitate such feedback, seeing all comments as opportunities to correct and improve everything they do.

Today's announcement shows that they (and their patients) will be the winners.

Transformational power of crowd sourcing and patient choice

Enabling meaningful choice and using this as a driver for improvement from providers.

Patient Choice is not just valuable in its own right as an enabler of patient-centric care, but has the (as yet unfulfilled) potential to drive transformational quality improvement by creating internal NHS competition.

Patients and the public are currently unable to make informed choice and thus cannot exert the pressure required to drive patient-centric change. Nothing currently being delivered in NHS looks capable of changing this.

In the same way that IT-enabled visualisation and understanding of performance for Boards and staff changes culture, so the same will be true for huge numbers of NHS patients. This requires a far more innovative approach than employed to date - but will benefit from the same technologies and understanding employed by many other industries which focus on empowering and supporting users by enabling them to understand realities behind often complex data sets.

Once users understand the huge variance across the NHS, they will exercise choice - and this will create positive pressure for change and improvement across the service.

Existing traditional approaches (doing what we do now in a better way) have failed to harness this potential and will continue to do so.

Is it time to unleash the “armchair auditors”, time to trust the patients and users of the NHS to be the prime judges of the service they pay for, and to fully share this information and opinion in a transparent and open way?

Analysis of - “Understanding what matters” (Department of Health)

iWantGreatCare’s ‘Analysis Of...’ series (1) - 'From Ward to Board'

This is the first post in the ‘Analysis Of...’ series; stuctured commentary on salient publications, conferences and newspaper articles related to patient experience monitoring, analysis and improvement. There will be an ever increasing volume of discussion across many channels in the patient experience space and this series will carefully select out the most relevant, most controversial or the most authoritative and look at them in more detail. The structure for ‘taking a closer look’, and one that will become familiar to readers is Cut it, Dissect it, Digest it, Rate it.

First in the series is a publication from the Department of Health titled Understanding what matters: A guide to using patient feedback to transform services (May 2009). This is a good publication with which to kick off this series since it is recent and topical. It also presents a well written, comprehensive guide to the labyrinth that patient experience can be to some. The publication title is somewhat long winded and for brevity will be referred to as ‘the guide’ from now on...

CUT IT? (i.e. does it ‘cut it’?)– Yes it does. This is a timely piece. The interest in, and activity around, patient experience is rising and many are jumping on this wagon with no clinical background or understanding. The risk of such opportunism is that valid patient experience measurement is not acheived, and the importance and power of unlocking the voice of patients is not given the priority it deserves. There is no time to be wasted with “making it up as you go along” or deploying non-specialised providers for what is a highly specialised area. The impending pressure on budgets, and consequent cuts in services, could have a profound effect on patient experience, and rigorous baseline measurements must be put in place with out delay.

The guide is a comprehensive account, touching on all the main themes in patient experience: capture, analysis, feedback and action. Only one problem with guides – they are like torches in a drawer on a dark night: someone needs to switch them on.

DISSECT IT – The guide notes that patient experience is still very hospital focussed and needs to be widened across PCTs, including community care. Although hospitals may be doing some patient satisfaction surveying and complaints handling, only a few are doing adequate patient experience ‘tracking’. The granularity of the data being collected is at best limited to ward or department level, reducing the ability to use the information to deliver the behaviour and culture changes necessary for sustained improvements. Moreover, patients and carers should be offered simpler means of rating the services they use; tracking experience on hand held pads is far from adequate to collect the detail and quantities of data required. The evidence base suggests that patient perception is mostly influenced by the individual clinician or carer and thus assessing experience at this level is key. Implementing such systems requires clinical engagement as a core component for the success of patient experience performance management programmes.
Case examples throughout the guide provide illustrative detail and meaning and are recommended.

DIGEST IT – The guide touches on the essential principles of patient experience but since it is a guide and not a ‘how to manual’ it does not go into detail. The first issue is the benefits to be gained from excellent monitoring of patient experience. Board directors need to fully understand these principles: business cases and investment papers need to demonstrate the full value justification over time; a business case for patient experience which simply puts forward a ‘plug and play’ type technology acquisition will not work.
Another area not covered in the guide is the importance of local media engagement as part of any patient experience programme. This has to be done to promote and celebrate success within local communities. Brand building for the local NHS can be powerfully worked out of good media engagement.

The guide also warns readers to be conscious of the need to get ethical approval for conducting patient experience research. The ethical issues and consideration of patients is paramount and should always be considered carefully. However, there are effective ways to do this whilst still maintaining momentum and the speed required to deliver rapid benefits in patient experience programmes. iWantGreatCare is particularly interested in research to fully understand the links between patient experience and safety, and patient experience and clinical outcomes. The skill will be to combine this academic base whilst rapidly addressing the new wave of consumer-driven healthcare; doing this now, both for and WITH patients and carers.

RATE IT ****

Meaningful measurement - time to turn words into actions

Measuring quality - the fundamental first-step in improving quality
The majority of NHS organisations (and individuals) have no accurate and timely way to measure their performance, nor to compare it with other providers.
In contrast to organisations in the commercial sector, whether at board level (exec and non-exec), through management to clinical, front-line staff there is no rigorous, valid way to allow direct, continuous assessment of the quality of care delivered.

The need to measure quality is more urgent than ever before, due to the reorganisation of services that will be required as a result of budgetary pressures post 2011. To be sure that quality is maintained requires it to be measured before, during and after any changes. Without this organisations are deluding themselves if they think they can be confident about quality of service.

Warning - Merely collecting data on clinical outcomes alone is inadequate:
a. In the majority of clinical areas the quality data required is simply unavailable
b. The Mid-Staffordshire disaster shows that current data sets collected are wholly inadequate to accurately monitor service provision with the granularity or timeliness required - Mid-Staffs data was insufficient for the Chief Exec, non-execs, clinical staff, Monitor or the HCC to have visibility of reality
c. Clinical outcomes alone are only half of the equation (quality = outcomes X experience). The NHS cannot understand or assess quality until patient experience is approached with the same seriousness and importance as is monitoring and response to hospital-acquired infection. This requires new thinkning and innovative use of IT driven systems to collect and visualise the data
d. Data itself has little or no value - impact on organisational performance and quality are only realised when the information is accessible, understood and integrated in the systems and processes of the organisation, e.g. enables culture-change. When this is achieved it is proven to deliver improved outcomes, decreased litigation and decreased staff-turnover - all massive clinical and financial benefits to the NHS and patients.

Thus the challenge (and opportunity) is how to provide every NHS (and private-sector) organisation with the insight and understanding required to measure and improve quality. Successfully enabling this will reveal areas of quality excellence, as well as rapidly and accurately identifying areas for improvement.

The Emperor's new clothes

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?

"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.

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.

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?

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.

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.

• Where are the NHS watchdogs now? (guardian.co.uk)


• Heads should roll over the Staffordshire hospital scandal (telegraph.co.uk)


• 5 more fresh articles...

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.

Gordon Brown embraces web-rating of healthcare

Few of you will have missed this week's announcement that web-based ratings of patient experience will become a mainstay of both delivering truly patient-centric care, and of ensuring patient experience is integral to the assessment of quality in the NHS.



The iWantGreatCare team is naturally delighted by the rapid, widespread recognition of the need to harness patient opinion in this way - having been amongst the first to have given NHS Trusts the ability to realise the many benefits of this path to total quality. As contributors to the Darzi Review in this area it is fantastic to see the principles of how to maximise benefits to both patients and healthcare professionals central in these plans.



The critical next step of course is to truly engage the public, professionals and all NHS Trusts with how such systems can directly improve quality of care, staff-satisfaction and the experience of every single patient in the UK.



Two key principles:

1. For users: Ensuring all data is open, transparent, easy to access and comparative - enabling true choice and maximising pressure on organisations to be excellent

2. For organisations and professionals: Feedback must be granular and real-time. If a patient says care was excellent on Ward 5A then the team there must now promptly. Likewise if three users says the dermatology out-patients is dirty and over-crowded the staff and managers need to know that day, so they can take immediate action - not have to wait six months for a HCC review to tell them that patients are having a poor experience.

Creating patient-centric care

Patient-centric care is a central theme of the Darzi review - and hence a key part of the changes and vision for the NHS. This is absolutely right, and long overdue: patient-centric care is known to be effective in contributing to other health system goals such as efficiency and effectiveness.

However international studies show that it is easy to talk about such care, far harder to achieve it: patients often rate hospitals and medical care providers highly, but report "significant problems in gaining access to critical information, understanding treatment options, getting explanations regarding medications, and receiving responsive, compassionate service from their caregivers".

Given the NHS's recent "conversion" to the mantra it is vital to learn from those who have already been shaping service delivery in such a way.

In 2007 the Commonwealth Fund and the Picker Institute in the US carried out interviews with opinion leaders selected for their experience and expertise in either designing or implementing strategies for achieving excellence in patient-centered care. The detailed report (pdf) gives clear guidelines for what is necessary for those in the UK seeking to deliver high quality, patient-centred care and identifies the following critical factors. How many of them does your organisation deliver on?

* Leadership, at the level of the CEO and board, sufficiently committed and engaged to unify and sustain the organization in a common mission.
* A strategic vision clearly and constantly communicated to every member of the organization.
* Involvement of patients and families at multiple levels, not only in the care process but as full participants in key committees throughout the organization.
* Care for the caregivers through a supportive work environment that engages employees in all aspects of process design and treats them with the same dignity and respect that they are expected to show patients and families.
* Systematic measurement and feedback to continuously monitor the impact of specific interventions and change strategies.
* Quality of the built environment that provides a supportive and nurturing physical space and design for patients, families, and employees alike.
* Supportive technology that engages patients and families directly in the process of care by facilitating information access and communication with their caregivers.


Related articles:
NHS hospitals 'suffering from lack of compassion'

Teaching "strong relationships"

It is almost a cliche (but like most cliches, based on fact) that medical schools take varied, bright, positive, caring, students, fill them full of science and facts (with a bit of communication skills tacked on the side) and turn them into efficient machines for managing hospitals stays of patients. There is no evidence to suggest that the bad effects of this process have been addressed by recent changes in medical training.

Perhaps as a result of this, people have become increasingly disenchanted with their relationships with their doctors with complaints increasing, whilst many doctors move out of the profession or take early retirement - not finding the passion and fulfillment that they went into the profession for. But a few pioneering medical schools in the States are attempting to rewrite medical education and produce doctors who love their jobs and patients who love their doctors. (Seems like rather a sensible goal).

A study released in January's Academic Medicine profiles a program at Indiana University as well as four other U.S. medical schools that sought to teach faculty members a different way of instructing medical students. The curriculum highlights the human dimensions of care, such as the need to communicate effectively, show compassion and build strong relationships.

As covered before on "Experience Matters", such "human dimensions" predict great clinical outcomes, happy patients and satisfied doctors. Not only should they be a major part of all medical school training, but such education and support should be part of lifelong professional development for all healthcare professionals. Most doctors know this is essential and embrace it, the others might do well to question why it was that they went into medicine.

Poor communication predicts complaints against doctors

But more importantly, predicts unhappy patients not getting the care they need.

An excellent patient experience (as measured by quality of communication from their physician) not only predicts quality clinical outcomes, but is important in protecting the doctor (and her organisation) from complaints and reduces the risk of litigation.

Of course all good doctors already know this and make monitoring and continually improving their communication skills a priority. It is interesting to see "early-adopters" amongst doctors now embracing web-based feedback from their patients as another tool to ensure excellence.

This JAMA paper from 2007 (JAMA. 2007;298(9):993-1001) describes a detailed, ten-year prospective study of complaints against doctors, and then performs regression analysis against their exam results in clinical communication skills. Final line of the conclusion is clear and powerful support to all who understand that an excellent patient experience is an integral part of excellent care, and not just a "nice to have":
"...the patient-physician communication score in the clinical skills examination remained significantly predictive of retained complaints (likelihood ratio test, P < .001), with scores in the bottom quartile explaining an additional 9.2% (95% CI, 4.7%-13.1%) of complaints."

Whilst communication skills are now an integral part of most medical schools' curricula, patient satisfaction scores are not increasing - is it time to make communication skills a core part of regular, re-training for all doctors?

NHS Constitution 2

The NHS Constitution makes the following demand of patients:
"You should give feedback – both positive and negative – about the
treatment and care you have received, including any adverse reactions you
may have had." (Section 2b of the NHS Constitution)

Interesting to think how much feedback this could result in if even 50% of patients took their obligations to the Constitution seriously? How could that much information be collected, what would the NHS do with it, and what tools and systems would patients need to "do their bit"?

The Wisdom of Patients

How can we best capture the wisdom, knowledge and insight of patients to shape the delivery of healthcare?

"The Wisdom of Patients: Health Care Meets Online Social Media", Jane Sarasohn-Kahn's engaging and well-informed report (full text available at the link), details how innovative collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management, as well as making ever more informed and pro-active choices about their care.

Including an extensive listing of health media resources and examples of best practice, the report makes it clear that it is now not just the "technologically savvy" who are generating and sharing content. The collective wisdom harnessed by internet social media "can yield insights well beyond the knowledge of any single patient or physician", writes report author Jane Sarasohn-Kahn.

According to the report, the growing expectation of patients for transparency will drive the evolution and rapid uptake of social media in health. The author concludes that the ongoing demands of a "consumer-driven health marketplace" (patient choice in the UK?) will inspire innovation in applications that integrate clinical...and ratings information.

Although a US-focused report, all the principles apply just as much to patients (and providers) in the UK. It will be interesting to see which UK organisations are first to see the potential of this shift in culture, and how they create new ways to engage with, learn from and inform their public and patients.

Ageism in NHS care?

Doctors highlight need for better NHS care for elderly
Ageism in healthcare is in the news after Help the Aged published research showing that many geriatricians consider the NHS to be institutionally ageist:

* 72% of 200 doctors said older people were less likely to be considered and referred on for essential treatments

* More than half the doctors said they themselves would be worried about how the NHS would treat them in old age

Respect, dignity and reducing health inequalities.

  Whilst many clinical teams - and their counterparts in social and community care - do a fantastic job, this research will come as little surprise to those who look after the elderly. As patient-centred care gains momentum and a priority across the NHS, with improved systems being put in place to measure and understand the experience of patients, it is vital that such systems truly harness the experience of all our patients - especially those for whom we need to strive hardest. Fully representing the views and experience of elderly patients and other "hard to reach" groups is an area in which iWantGreatCare has special interest and expertise, this new research reminds us all why such focus is so badly needed from all those providing or commissioning care.

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NHS constitution 1: meaningful engagement

"PCTs are required to demonstrate that they are proactively leading continuous and meaningful engagement with the public and patients to shape services and improve people's health."

The NHS constitution puts expectations on both patients and those providing healthcare. PCTs are expected to be "proactive" and "meaningful" in their engagement. Of course, these are already competencies required for World Class Commissioning and it is interesting to watch the range of ways in which PCTs are trying to meet (and in some cases exceed) these expectations.
It is clear that "meaningful engagement" is going to require a lot more than a few focus groups and production of a newsletter!

Measuring experience of care homes

As the Times launches its series and survey on care homes it is a good time to remind ourselves of the challenges in ensuring the voice and experience of care home residents is harnessed. But also, of the massive opportunity to improve the quality of care that could result.

The article highlights not only the scale of the challenge - but also the appalling human cost of getting things wrong. Proxies (relatives and friends) are known to be accurate reporters of healthcare experience, particularly for the elderly and those with long-term conditions. Capturing this information presents a powerful and valid way to ensure that the quality of care delivered in homes is visible and transparent - something that should be important to all of us.

Capability of PCTs and acute trusts

The HSJ reports the health select committee opinion that "Primary care trusts are incapable of implementing the next stage review due to "striking and depressing" management weaknesses."

Whilst this was a broad and sweeping statement, few would argue that PCTs (and indeed acute trusts) face a rapidly changing and highly demanding set of expectations, requiring skills and experiences that are in short supply in both the public and private sectors. When one considers the challenge of improving patient experience (not just measuring it) across the whole of the NHS, then it is likely that similar challenges will be faced. Delivering a better experience to our patients requires a thorough understanding of the issues that exist and what matters most to patients; continuous, accurate, granular, real-time data of local experience; and a carefully designed improvement programme to act on this data. A challenge for even the best organisations!

NHS Digital Dreams

"...a policy that emphasises choice needs to put information at its very core"
Although not brand new, it is worth reviewing this HSJ article from August 2007, to see how much progress has been made (or not) in supporting patients in making informed choices over their healthcare.
Is the view of Angela Coulter (former Chief Executive of Picker Europe) that "information on sites such as NHS Choices and NHS Direct online tends be 'didactic, rather old-fashioned and paternalistic' rather than recognising patients' roles in making decisions about their healthcare" a fair view of today's service? Or is the NHS now making the digital dreams of patients reality?

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