Get the measure on patient outcomes

There has been increasing recognition of the importance of outcome measurement involving patients in healthcare policy.

Michael Porter of Harvard Business School has been relentlessly promoting the value equation in healthcare, in which outcome is accorded the same weight as cost; concepts such as value or outcome based healthcare are very much in vogue and being considered in the development of new tariff arrangements; and the importance of measuring clinical outcome, rather than just activity or process, is clearly becoming a key part of the evaluation of new models of care.

‘Surely we need to be routinely measuring the benefit gained from our health and care system’

For centuries the only outcome routinely measured has been death, but while Florence Nightingale collected data on the dead, alive or relieved, the routine collection of outcome data has continued to focus on dead or alive.

There has been more sporadic collection of outcome data involving patient feedback relating to clinical benefit in research trials – usually on carefully selected cohorts of patients – and in structured clinical audits, but even the UK’s national clinical audits probably only cover about 50 per cent of treatments in the NHS and they are not mandatory.

Measuring benefits

At a time when regulators seem to be focusing principally on achievement of minimum standards and the reduction of failure in healthcare, surely we also need to be routinely measuring the benefit gained from our health and care system.

This would not only give the government, commissioners, providers and, above all, patients the opportunity to assess the positives of our healthcare  – national and local – but would also act as a focus for improvement across all patient care – not just reduction of failure, which the routinely collected data currently measures.

Routine collection of patient experience and net promoter scores (friends and family test) are now the norm, but routine collection of clinical outcome and quality of life involving patients – as measures of benefit following treatment and care – is less universal; this despite the much vaunted NHS Outcomes Framework upon which the clinical performance of the NHS is meant to be measured.

In this context, the national pilot programme, using Patient Reported Outcome Measures (PROMs), was launched in 2009, described correctly at the time as a world leading initiative. This mandated the routine collection of PROMs from all patients undergoing hip and knee replacement, hernia repair and varicose vein surgery.

As experts in the field, including John Appleby at the King’s Fund, have pointed out, the “millions of data points collected since then have yielded powerful insights into how much surgery improves health; how performance of hospitals and surgeons differs; and how cost effective these surgical procedures are”.

‘Agreement should be reached on standard measures to be used to enable sensible comparison’

This programme, together with the requirement for medical practitioners to collect outcome data for five-yearly revalidation with the General Medical Council, has led to huge interest in routine outcome measurement involving patients themselves across the country. Formal pilot projects are under way on a range of procedures and clinical conditions.

Many clinical units have either established their own PROMs or found appropriately validated measures in the literature; although clinicians were initially rather resistant, we now have the situation of a 1,000 flowers blooming, but often in a rather unstructured way.

The problem is that, unlike the national PROMs programme, there is no coherent strategy or structure for extending the routine measurement of outcome involving patients across the system.

The biggest issue is the lack of coordination and development of a nationwide programme that encourages or mandates specific treatments or conditions to be measured across the country and specifies which tools should be used.  

Appropriate tools could be discussed and agreed after consultation, then used by all to enable consistent measurement of clinical benefit and valid comparison between units or teams across the system.

Drive for transparency

In the private sector, to drive transparency and enable more informed choice, the Competition and Markets Commission has mandated all private hospitals (including cosmetic surgery units), NHS pay bed units and their consultants to submit activity and clinical data to the Private Healthcare Information Network (PHIN), the organisation selected by the CMA to collect, analyse and publish comparative data on its website (the writer chairs the PHIN Board).

There has been consultation across the sector and agreement has been reached on a proposed set of procedures and measures; it is expected that, in due course, when agreement on implementation timelines has been reached, aggregate PROMs data for selected procedures will be published across the private sector.

Surely it is time for a similar approach to be adopted by NHS England. Agreement should be reached on standard measures to be used to enable sensible comparison and then the national programme should be extended to other specialties and conditions/procedures; also, importantly, to the major long term conditions where routine collection of data reported by the patients themselves would be extremely important in supporting self-care, driving improvement and reducing clinical variation. 

If we genuinely believe that patients should be at the centre of everything we do, then listening to them in a systematic way to learn whether they have benefited from the treatment and care we provide is essential, not only for those patients but also for the healthcare system as a whole.

Andrew Vallance-Owen is chair of the Private Healthcare Information Network