If the reality of patient care matched the rhetoric of the average “patient-centred” NHS provider it wouldn’t have been necessary for NICE to produce formal guidance on how to improve the patient’s experience of care, a recent BMJ editorial suggests. Nor would an international literature review of the indicators used to measure patient-centred care have found that the many and varied measures deployed have largely been developed without any input from patients.

The International Review of Patient Centred Healthcare Indicators was carried out by the International Alliance of Patients’ Organisations and it’s currently out for consultation. The alliance hopes that responses to it might inform the development of a robust and common set of indicators which will enable healthcare providers in all countries to reliably measure their patient-centred credentials, benchmark them against other providers, and use the data to raise their game.

At the Alliances’ annual meeting in London last month, speakers underlined that there was no shortage of data collection on patients views and experiences, or self assessment tools for organisations and hospitals. But patients were seldom made aware of if, and how, these were used to improve services and outcomes. There was also a failure, participants agreed, to involve patients in formulating policy, and they felt that health professionals were poor at pointing patients in the direction of dedicated support groups and organisations.

Will things improve in the future? Professor Jonathan Trotter, of the International Centre for Governance and Public management in Warwick, was not sanguine.

“The clinical commissioning groups have a statutory obligation to involve patients, but not to be accountable to them. I think the government is moving away from patient engagement and involvement just at a time when we need it most, as patient self management of chronic disease has become so important, ” he underlined.

Spare a thought for Africa, was the message from Elizabeth Matare, chief executive of the South African Depression and Anxiety Group.  Here the key challenges were still getting access to care, and being able to afford it.  The patients voice is very weak, she said. “Our health ministers go to Geneva to negotiate but they don’t ask us what we need and they don’t reflect the truth of what is happening on the ground.” She went on to urge patients to engage in advocacy and hold ministers to account.

As debate on reliable parameters to measure patient-centred care continues it is worth noting that the alliance’s suggestion that it should be measured at different points along the patient journey. Intuitively this makes sense, although it could be argued that as journeys are so individual, snapshots at given points will yield very variable results.

That said, a recent study to assess if patients across Europe value the same aspects of care, carried out among patients attending fertility clinics, found that patient’s views of what constitutes patient-centred care are remarkably consistent.

Tessa Richards is analysis editor, BMJ.