When the wisdom of crowds meets the kindness of strangers: why patient and citizen participation is fundamental to high quality health and care services

Since the publication of this blog Tim Kelsey has left NHS England.

When patients are ignored, they are most at risk; that was the central conclusion of the report by Robert Francis into Stafford hospital. Don Berwick, in his safety review, said the NHS should be ‘engaging, empowering and hearing patients and theirs carers all the time’. The most important goal of a modern health service is to listen and act: this is the essence of care – and to do so transparently so that poor patient experience does not go undetected and excellence can be celebrated.

That’s been my mission since I started as National Director for Patients and Information: to support health and care services transform transparency and participation. NHS England is pledged to radical change: giving patients and citizens the ability to use their own data, take control of their health and care and make meaningful choices; making clinical data flow so we can create a modern digital (and paperless) health service and be confident about the comparative outcomes of services; setting new standards for the dignity and personalisation of care.

But above all my priority is to improve the way in which health and care services listen to people  – and can therefore act and change. The work of entrepreneurs and apps developers like Patients Like Me, Patient Opinion and iwantgreatcare confirms the benefits of real time patient and citizen participation. The challenge is to do this at scale: open the doors, invite the whole community into the job of improving our national health service. Share decision making. Everybody needs the opportunity – and should be encouraged – to participate.

In April, the NHS did something unprecedented – it launched the Friends and Family Test (FFT), the first time a health service has reported a single measure of patient satisfaction for every hospital. It asked people to say whether they would recommend local inpatient and A&E services; the results are published every month on NHS Choices. By October more than 1m people had participated and hundreds of thousands had volunteered additional real time comments and feedback to local hospitals. ‘Great news’, said David Cameron – who has championed FFT from the start – in a tweet to mark the milestone, ‘giving patients a stronger voice in the NHS’.

This is the boldest move yet to promote patient voice at volume in the NHS and to concentrate our collective focus on improvement in care. At Hillingdon Hospitals NHS Trust, patients reported they could not sleep at night so staff have launched a ‘comfort at night’ campaign and developed a protocol for patient experience ‘never events’. In Lewisham, patients complained about poor communication and staff attitudes. They now plan daily visits for each patient. In Hull, bereaved families complained they had to pay car parking fees; the Trust has now given free passes to relatives in mourning. Routine feedback enables a different kind of conversation between the patient and the clinician. It is a catalyst for change. Commissioners will have to demonstrate how they are improving FFT for local communities to qualify for Quality Premium incentives.

This kind of customer insight is fundamental to the way we make choices as consumers. The NHS is not a hotel chain, nor a city authority: but there are vital lessons it can learn from Amazon and Trip Adviser about the power of transparency and feedback. In New York, more than 90,000 people every day share their views by phone, email and tweet on rubbish collections, potholes and dangerous buildings – and the city has become safer and cleaner.

Friends and family has its critics: people worry about the potential for gaming, for example. But the evidence, after six months, is of overwhelming human benefit and that’s why every maternity unit started to offer FFT to patients in October and why every NHS service will do so from 2015. It’s also why we are now requiring that every local organisation should offer people the chance to comment on, as well as rate, services from next year (most already do).

Some people ask me how we are ensuring the focus on transparency and participation is inclusive. We have launched Care Connect, a pilot project to test how giving people access by telephone and social media could improve feedback and complaints.  Recognising that digital exclusion is an issue in some of our communities, we have started a partnership with the Tinder Foundation to help 100,000 people learn how to go online for health benefit. None of these initiatives exist in isolation, nor do I see them as ‘silver bullets’.  My aim is to work with and build on existing good practice to make people’s voices heard and help the NHS act on them.

In a characteristically thoughtful talk last week, MT Rainey, social activist and former marketing guru, issued this challenge to the NHS: ‘How will we make the wisdom of the crowd meet the kindness of strangers?’ How do the tools of our age – big data, the internet, the mobile phone – meet the values of our species: compassion and honesty and doing our best for others? Friends and family is a good start. We are witnessing the birth of a new knowledge economy and a new social movement. The future is open.

This piece has also been published in Health Service Journal.

Tim Kelsey was previously National Director for Patients and Information, since the publication of these blogs he has left NHS England.