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.

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.

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

Tuesday 10 March 2009

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.


Please read our terms of use carefully. They apply to all access to, and use of information on, this site and to the posting of information and ratings on this site. Whether you use this website to obtain information or to provide a rating or review or other information, your use of this website indicates that you agree to, and will comply with, our terms of use. If you do not agree to our terms of use, please do not use this website.

For details of the personal data that iWantGreatCare collects and the purposes for which iWantGreatCare uses your personal data please read our privacy policy. Whenever you provide us with your personal data, you are consenting to its collection and use in accordance with our privacy policy.