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Personalised care versus tick box culture

How will we know if personalised care actually works if the NHS is not well equipped to ask patients about it? Miles Sibley explores what the NHS has to do to understand personal patient experience.

One year ago, the NHS Long Term Plan was published. It is wide-ranging, but a theme that runs all the way through is ‘personalisation’. It says that one of the “five major, practical, changes to the NHS service model” is that “people will get more control over their own health, and more personalised care when they need it”.

That is a worthy ambition, but how will we know if personalised care actually works?  The obvious answer is, ask the patients.

Or at least that seems like the obvious answer.  However, a new report from the National Institute for Health Research (NIHR) suggests that the NHS is not well equipped to ask patients about personalised care.

An immediate challenge is that conventional feedback mechanisms are not personalised. The report describes “procedure-driven, standardised approaches such as surveys and checklists [that] are too narrow”. In an echo of the Long Term Plan’s call for personalisation, the report says that “patient experience feedback is about being heard as a unique individual… This requires their experience to be considered as a whole, rather than reduced to a series of categories”.

Underpinning personalisation is the concept of choice. But a second challenge is that patients cannot always choose how and when to offer feedback: “In general, only sanctioned channels get monitored and responded to, with feedback from other channels ignored.”

Personalisation also depends on dialogue. So a third challenge is a failure to close feedback loops, which leaves some patients feeling treated impersonally: “The lack of organisational response to their survey feedback meant they perceived it as a ‘tick box exercise’ and they thought that their comments would not be used.”

Underpinning personalisation is the concept of choice, but patients cannot always choose how and when to offer feedback.

The question of tick-box culture is picked up in another recent publication, in which David Boyle (a former political adviser) discusses the tendency of bureaucracies to think inside the box.

Predetermined rules and algorithms, says Boyle, can take officials into the realms of dehumanised decision-making.  In this context, the NIHR’s reference to procedure-driven, standardised approaches sounds like the antithesis of personalisation.  And while the NIHR report describes people being reduced to a series of categories, Boyle calls on his readers to “refuse to categorise yourself on feedback or monitoring forms”.

So how can patient feedback mechanisms move closer to the Long Term Plan’s goal of personalisation? The answer could lie in a blog from the government’s Policy Lab , which calls for greater use of ‘thick data’ to support ‘human-centred policy’.

Thick data is the kind that provides insights at an individual or group level, as opposed to big data, which offers cumulative evidence at a macro, often systemic level. The Policy Lab recognises a reluctance in some quarters to deal with “the emotional perspectives captured in data from individuals”, or to accept evidence that appears to be anecdotal. But “emotional responses in the research narrative [can reveal] a fresh perspective to policy teams and service providers, beyond the usual performance data”.

An NHS aiming for personalised care has to understand personal patient experience. Conventional surveys and ‘sanctioned channels’ have their uses. But perhaps the big data emerging from these needs to be mixed with the thick data of personal testimony. And for the NHS as a whole, that might mean rethinking how it goes about getting feedback.

Miles Sibley is Director of the Patient Experience Library, the national evidence base for patient experience and involvement. 

The issues raised in this blog will be part of the discussion with Miles at the Melting Pot Lunch on 21 February.

Miles Sibley14 February 2020


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