Individualised and Personalised QALYs in Exceptional Treatment Decisions

Guest Post by Warwick Heale

When NICE decides whether to make a treatment available on the NHS it considers both clinical effectiveness and cost effectiveness.  Cost effectiveness is based on population-level QALY data, as is appropriate for a population-level policy.  However, this can cause problems for exceptional individual patients.

When a doctor wants to offer an individual patient a treatment that has been deemed by NICE not to be cost-effective, the doctor can make an Individual Funding Request (IFR) to NHS England or a Clinical Commissioning Group.  The doctor must convince the IFR Panel that the patient is exceptional and that it is worth spending the money on this patient, leaving less to be spent on others.  The Panel’s presumption, based on the population-level data, is that the treatment will not be cost effective, and this stacks the cards against the individual patient, however extreme the patient or their condition may be compared to the population average.

One solution to this might be to consider individualised cost or response (individualised QALYs) or personalised valuations of health states (personalised QALYs).  Applying these concepts might protect the patient from a treatment being refused even if he or she is markedly different from the population average.  In doing this, we would actually promote utility and effective use of resources which is one aim of the IFR process, but one which I think it fails to achieve as effectively as it might.

Consideration of personalised QALYs also offers a justification for offering a Jehovah’s Witness a more costly alternative to blood transfusion, on the basis that this would actually maximise the utility we gain from our limited resources – in contradiction to the more obvious view that this would compromise utility.  Furthermore, in doing this we don’t need to give any special status to religious considerations – the Jehovah’s Witness, the patient of a different faith and the atheist should all be subject to the same principles of personalised QALYs.  Personalised QALYs also allow us to think about patient choice alongside utility rather than as independent principles.

Read the full paper here.