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.  

Entitled “Improving care by using patient feedback,” the report summarises nine recent research studies about using patient experience data in the NHS. Unfortunately, it finds that, “A lot of resource and energy goes into collecting feedback data, but less into analysing it in ways that can lead to change.”  

Patient feedback is collected (in theory at least) to drive quality improvement, manage risk, and gather insights that clinicians and healthcare managers might miss. Could it also be used to test whether efforts to personalise care are working? The report does not address this question directly—but it does hint at some challenges. 

The first of these is, ironically, that conventional feedback mechanisms are not, themselves, 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 and not just as part of a group. 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.”

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. By following predetermined rules and algorithms, officials (whether willingly or not) move into the territory 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 address the weaknesses identified by the NIHR, and move closer to the Long Term Plan’s goal of personalisation? Step forward Andrea Siodmok, another political adviser who, in a recent blog, 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. Siodmok 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, she says, “emotional responses in the research narrative [can reveal] a fresh perspective to policy teams and service providers, beyond the usual performance data”.

For Siodmok, the blending of big data and thick data is the sweet spot, and perhaps this should be the direction of travel for patient feedback. Conventional surveys and “sanctioned channels” have their uses. But an NHS aiming for personalised care has to understand personal patient experience. And that might mean rethinking how it goes about getting feedback.

Miles Sibley is a Director for the Patient Experience Library—the national evidence base on patient experience and involvement. www.patientlibrary.net

Competing interests: MS is a Director of the Patient Experience Library. The library is entirely self-financing, it receives no grant funding and accepts no advertising.