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.

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.

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?

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!