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.

Transparent patient experience at heart of NHS quality improvement

“We will enable patients to rate hospitals and doctors according to the quality of care they received, and we will require hospitals to be open about mistakes and always tell patients if something has gone wrong,”

The UK Government has made rating of hospitals and doctors - and publishing all this information in a transparent "TripAdvisor for Health" manner - central to the improvements the NHS needs to deliver.


There is strong evidence that systematic reviews and rating of hospitals and individual doctors is powerful in driving quality improvement - and this announcement will be welcomed by patients and all those providers focused on excellence. iWantGreatCare has been working with those providers and commissioners leading the way in harnessing patient experience to deliver quality improvement in a time of financial squeeze, and who have already seen the massive, transformational benefits that such an approach delivers: better care, lower costs, increased staff satisfaction.

For organsisations new to this area there may be many questions about how best to collect this information, how to meet the needs of non-English speakers, offline versus online feedback, information governance and data protection issues etc.

The good news is that all these challenges have been solved and the benefits of embracing patient experience to improve quality are available to all doctors, Trusts and hospitals today - even before the Government make it mandatory.

Using patient experience for improvements to GP out of hours care

GP out of hours care (or the lack of it) is an experience that frequently leads to concerns and negative reviews from patients writing on iWantGreatCare. It provides a good example of how listening closely and carefully to systematic patient experience can inform and highlight concerns before service deterioration leads to patients suffering and adverse outcomes. But of course such an early warning system is only effective if the voice and experience of patients is made central to improving and monitoring the NHS.

Thankfully Andrew Lansley has made reforming the current situation of GP out of hours care an early and clear action for the new Government. This is to be applauded and will be welcomed by the many thousands of patients who each week need quality, compassionate care through the night or at weekends. It will also be welcomed by the huge number of GPs who were opposed to changes which destroyed the UK’s previously excellent out of hours care provision - and who every day see the damage and suffering that second-rate care causes.

It is also worth noting that those doctors who have maintained responsibility and ensured their patients get the very best care out of hours, attract rave reviews, huge praise and thanks from grateful patients and their families.

iWantGreatCare at Health2.0 - Paris

The iWantGreatCare team presented at the prestigious Health 2.0 conference in Paris this week. Neil Bacon, the Founder of iWantGreatCare, gave the first public demonstration of the enhanced real-time reporting and monitoring dashboard provided to our clients and partners. His presentation, below, demonstrates how this gives healthcare providers, insurers and commissioners unique insight into the quality of services they provide, allowing new understanding for rapid, focused quality-improvement programmes.

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.