Smoke alarm to detect poor patient care

Dr Neil Bacon has written a short piece on his personal blog describing how patient experience (the ratings and reviews that patients submit on their doctor and hospital) can act as a “smoke alarm” for patient safety.

When there are 500,000 reviews on iWantGreatCare, UK healthcare will be safer and better than it is now - thank you for making your contribution to that journey.

Harnessing patient experience improves the care patients receive in Wales

The iWantGreatCare team is privileged (and not a little bit proud) to be an ongoing part of an innovative, powerful and important programme that is improving the service and experience of those receiving end of life care across Wales.

Edwina Hart, the Minster for Health and Social Services in Wales states that,

“...good palliative and end of life care must form part of the overall package of care provided to patients when and where it is needed, where ever possible, irrespective of their medical condition.”

There is total commitment and purpose in Wales to make real the intent behind this statement and the work of iWantGreatCare is just one part of an overall methodology and approach. But the detailed statement of the Minister vividly illustrates the central importance and power of continuously harnessing experience feedback from patients and their families.

“This patient feedback [iWantGreatCare] is directly influencing the work of the Implementation Board to steer service strategy for the future and further improve the care patients receive.

The programme provides an opportunity across the whole health economy for relatives to ‘tell us their experience’ when someone close to them was dying, describing both what went well and what did not go well. Its purpose is to share experiences with professionals to enable services to change and subsequently improve future services.”

To make this happen, the iWantGreatCare team worked closely with those delivering care across Wales to put in place a unique system that captures the experience of patients and their carers in a way that has never been done before. Feedback is collected both on and offline (in both English and Welsh) via a seamless, technology-enabled system that sends automated reports to those at the clinical frontline on a regular basis, as well as "instant alerts" that provide immediate electronic alerting when the experience of care falls from the high standards that the teams across Wales have set for themselves.

It is exciting to see that the harnessing of patient experience - when done in an innovative, engaging and evidence-based manner - really can deliver true improvements to the care of patients. In turn this motivates and inspires those delivering the care to reach even higher standards. This is the power of the iWantGreatCare approach: to turn patient feedback from what it has been to date (a routine data collection exercise of "box-ticking and meeting targets") into an active driver for service improvement and quality healthcare where success is measured through the eyes, wishes and needs of patients themselves.

Perhaps the greatest - and most pleasant - surprise of the iWantGreatCare programme in Wales has been the incredible response of the doctors and nurses about whose care the patients are continuously providing "ratings and reviews". Initially cautious about asking patients for comments and ratings, within a few weeks of starting the initiative the detailed feedback on their performance has become something that is highly valued and central to their own assessment of the quality and value of the work they do. The combination of structured, comparative ratings (perhaps the first time that NHS staff have been given continuous, detailed assessment on their performance as viewed by patients), with the qualitative, detailed stories told by grateful patients at a time of great need, has surprised many by its power to renew and refocus the passion they have for their work. It is not an exaggeration to say that staff with many years experience working in palliative care, have not only been moved to tears by the moving responses from patients, but have come to view the regular reports from iWantGreatCare as a central and motivating part of their work.

iWantGreatCare is now working to deliver these same benefits to healthcare professionals (and their patients) across the UK and across all specialties in primary and secondary care.

iWantGreatCare founder gives EU keynote

Dr Neil Bacon, founder of iWantGreatCare, was an invited speaker at the EU's prestigious E-Health 2010 conference in Barcelona last month.

Taking the title, "Citizen 2.0 - harnessing patient experience for better healthcare", he outlined how services such as iWantGreatCare represent one of the most powerful drivers for improved quality, transparency and accountability in European healthcare systems. The presentation, which can be viewed below, focused on the power of systematically collected patient experience data to both reduce inequalities and drive down healthcare costs across all European member states.

"The informed citizen has true choice and creates massive pressure of "market forces" on providers."

Talk - Part 1

Talk - Part 2

NHS monitoring systems

Patient experience - solving the problems of today's failed monitoring systems.

Existing methods of measuring and monitoring NHS quality and safety are repeatedly shown to be slow, insensitive, inaccurate and misleading. The Care Quality Commission relies on expensive, centralised, backward-looking data collection which does not drive the change needed, nor build confidence amongst the public.

After further hospital disasters in Mid-Staffordshire and Basildon (and, we are told, more to come) we need new approaches that actually work and win the support and con?dence of the public, professionals and the media. Harnessing the user-voice to understand patient experience has the ability to:

• reduce costs,
• raise quality,
• empower patients,
• increase safety.

Using innovative technologies (well proven in other industries) makes it easy for patients (and their relatives and carers) to provide feedback in a valid, robust, structured manner, thereby delivering accessible, meaningful information about the things that matter to users.

To deliver this change requires vision, resolve and a willingness to absolute transparency in public services. It will reveal some difficult truths about the variation in quality across the NHS - but ultimately all patients, all staff and all NHS organisations will benefit.

Service improvements or simply closed hospitals?

The NHS needs to save money, Huge amounts of money. This requires fundamentally changing how things are done, not merely making current practices more efficient.

However, whenever PCTs embark on what is claimed to be service-redesign to deliver better, modern care in new ways that also save costs, they are rapidly attacked by their regional media and "angry, local people". For example, NHS Surrey told HSJ:

"...the campaigners were completely focused on “bed closure rather than service improvement” and invitations to come and see how new services were being delivered had so far been shunned."

This is of course not surprising and requires PCTs to re-engage with their public in innovative, open and transparent ways. Again, a whole new way of operating. iWantGreatCare is working with PCTs to address this problem, using real-time patient experience as a "barometer" of opinion, whilst also showing service-users that current structures and services are not only financially unsustainable, but also frequently deliver mediocre patient experience.

Real-time monitoring through iWantGreatCare allows PCTs to demonstrate that patient experience with existing services is far from satisfactory, and then to show that redesign has not led to a worsened patient experience. Only systematic, quantitative systems (implemented before redesign) have the potential to counter the problems that NHS Surrey and others are already facing.

It is hard to tell people their local hospital has to close. It is not quite so hard if you show them that real people - their peers - prefer the new provision and that the solutions deliver happier, healthier patients. That is the level of patient engagement needed not just locally, but also at a national level as we battle to reshape the NHS into a high quality, cost-effective, patient-centric service fit for 2010.

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.

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.

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?

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...

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'

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!