I wrote this piece a year ago, but thought it was worth fishing out again....
Involvement of ‘lay’ people in the NHS remains on the terms dictated by those within the system... Health related organisations have become compromised instruments of “co-management” of the NHS, accepting a place at the table in order to secure funding and recognition". So said the late Bob Sang, a passionate citizen-advocate, in 2002.
Twelve years on, the engagement industry encompasses academics, policy-wonks, methodological gurus, survey implementers, data-gatherers, equipment and kit suppliers, web masters, advisers and specialists, third sector advocates, activists and representatives... the list goes on.
We have policies and guidance galore for patient and public engagement (PPE), formal structures providing a statutory patient voice, Government rhetoric (‘nothing about me, without me’) and a new Commissioning Board (now NHS England) that states 'everyone counts'. But is this process-driven activity leading to improvements in responsiveness and accountability?
A castrated engagement industry has grown up that struggles to move beyond isolated projects or one-off initiatives. At strategic level, managers gather more evidence ('valid' and 'triangulated' data) about people's experiences, blend (some would say drown) it with 'performance' data and produce 126 page Board agendas on 'patient-centred care'. And nothing much changes. The NHS is masterful at buffering itself from hearing people's stories and the intelligence that comes from thousands of everyday experiences between staff and patients.
There is a similar buffering when it comes to engagement structures and governance. When a new set of institutional structures appear, engagement advocates clamour for a seat at the table. Debate about the purpose of such structures and the role of individuals becomes subservient to form. 'We' complain about 'them' doing 'tick-box' engagement, but inadvertently comply. Moreover, the poorly equipped representative can't get their voice heard, is isolated amongst professionals and drowns in a sea of papers sent to them the day before. But if they get angry, further marginalisation awaits for 'inappropriate behaviour'. Dissent quietens and the status quo prevails.
There are excellent local engagement projects around service improvement. But more needs to be done to translate them into organisational cultures that are 'patient-friendly'. We’ve got a blizzard of PPE toolkits on the ‘how’ of engagement, methodologies and techniques, rather than support to help influence organisational change. Whizzy events leave participants happy. But reports remain on the shelf.
I once met a Director for Commissioning and asked how hospital survey data informed commissioning decisions: "I don't have time to read them". But she argued she was patient-centred and would send a Non-Executive Director to look at car parking and food quality (wrong on so many levels!). I knew the real issue was frontline staff attitudes. Later, I saw a huge pile of surveys outside the Public Health Directorate. There was no time to analyse them, I was told. "Something urgent has come up" said the junior analyst. Didn't she see the data at her feet as important? She laughed. "I do, but others don't seem to". How much money is wasted on an industrial amount of data leading to zero change?
An increasing focus on ‘data’ around quality and patient experience risks turning the rich world of engagement into a technocratic and desiccated exercise. Only trusting relationships and dialogue between patient and professional leaders can help us make sense of, interpret and use data to inform decision-making and transform services. If people are only treated only as individual repositories of data, filling in ever more questionnaires, inputting into thousands of hand-held devices, a new generation of informatics gurus will be default take the engagement leadership role. Organisations can wash their hands of 'shared decision making' at strategic level.
Will online solutions help? There are excellent ones that build in facilities for dialogue. But, I've seen managers ignore that data too, partly because it is still at 'arms-length'. Partly, because it is not seen as valid. Is the urge for data destroying the potential for dialogue? It is certainly easier to manage bits of data than share decisions with complex, passionate, people.
Overall, we seem to have a frenzied engagement system that fails to engage leaders (managers, professionals, patient leaders), frontline staff (clinical and non clinical) and patients and the public. The way it operates - big set pieces, projects, structures, research, more and yet more data - seems to maintain the status quo rather than challenge it.
We have created an industry that is self-serving, one that produces minimal or unsurprising output, by co-opting people into, and taming data to fit, institutional structures. We can shift the structures as much as we like, but it won't change anything unless we find a new way of doing things - my guess is Bob would agree.
A longer version of this article appears as a chapter in 'Better Health in Harder Times: Active Citizens and Innovation on the Frontline (Ed: Jan Walmsley, Celia Davies, Mike Hales, Ray Flux) at http://www.policypress.co.uk/
If you liked this piece, try reading another blog? For example, my Future Patient Manifesto about a Patient-Led Healthcare future and a different approach to patient and public engagement. Scroll down, down, down...