Reflections on “hellish” local decision making
The purpose of health economics is to spend the health budget as wisely as possible. In economic lingo, to maximise health within the constraints of limited resources. Nationally, we have been putting this into practice since before 1999, when NICE was set up. Locally, however, the picture is different.
This became apparent to me at the Hellish Decisions in Healthcare conference I was at in January, which brought together decision makers and decision informers, such as health economists and health services researchers, to consider the challenges facing the NHS, in particular at the local level, where decision making is still fairly ad hoc.
There are two big challenges that I see with local decision making. One is that the way local decision makers are organised isn’t compatible with national decision making, leading to inefficiency. Another is that pressure from patients for certain decisions to be taken is felt much more acutely locally.
Local decisions have to be taken about all conditions, all the time. Unlike NICE, a Clinical Commissioning Group (CCG) responsible for providing healthcare to their local area can’t pick and choose what decisions to make, they have to provide care now, regardless of whether that care is optimal.
And that decision making is much messier than our economic models allow for. Our assumptions rely on unlimited budgets that can be freely reallocated, unlimited resources to provide care to all who need it, and perfect implementation. But the very reason these decisions are made is because budgets and resources are limited. This difference doesn’t usually matter for central decision making. We use a cost-effectiveness threshold that represents those limitations in the abstract, and implementation can be considered in the analysis. We can still make useful decisions within those constraints.
Locally, the picture is different. Budgets are siloed in anachronistic pools that don’t reflect how health is achieved, but rather how it is provided. So diagnostics go in one pool, surgery in another, and so on. Trying to improve cancer outcomes might involve spending more money on diagnostics in primary care, but the benefits from doing so appear in oncology, with no way for any savings made there to be reallocated. So primary care then has to make even more savings to fund their new investment, cutting into treatments that might have real, measurable benefits for patients.
Local authorities, at least at this conference, which admittedly probably isn’t representative, seemed to value cost-effectiveness. They understand and appreciate what it is for and why it’s important. But even before the question of whether the evidence is there is the question of how they can possibly implement it in this system.
And even that willingness needs refinement, too. Common misunderstandings about what is included in economic analysis were rife (the most common question I heard was “do you include [relevant health outcome] in cost-effectiveness analysis?” - for the record, the answer was always yes). A lot of this is because of the shortage of health economists. We’re a rare, and as a result expensive, breed. There isn’t one in every CCG, as there ideally should be. CCGs need much better tools for applying economic evidence to their decision making.
Local decision makers are also much closer to patients than central decision makers are. They must balance their budgets, local demand from both patients and clinicians, pressure from device and drug manufacturers, and further requests for exceptional funding, in the form of individual funding requests (IFRs). Which came up repeatedly as a particularly sticky area.
IFRs are requests for funding for treatments that are not routinely provided, on the grounds that the patient is exceptional. The basis for this is that as cost-effectiveness decisions are based on averages, there will be some patients to whom those averages don’t apply, for whatever reason. Less strictly economically, exceptionality can also be used in cases where the patient not receiving treatment would have significant consequences, for example for a single mother with young children. Cost-effectiveness decisions don’t generally account for these externalities for sensible reasons: it is not the job of the health service to subsidise other parts of government, so non-health effects (the social care costs of the children left behind) should not feature in decision making. You don’t have to think too hard to see why this argument might be problematic in some cases.
In this context, we must of course remember the patients that lose out every time a treatment that isn’t cost-effective is handed out. We can only see the mother in front of us who needs expensive treatment, rather than the 12 who could be saved with currently available drugs using the same money.
And local authorities actually seem to be doing a pretty good job with IFRs. The vast majority of claims are rejected, with local authorities holding to the exceptionality rule, and not caving to let it simply mean “human”. If the job of health economists in the NHS is to make the invisible patients who stand to lose from a funding decision visible then, well, local decision makers probably understand that more clearly than anyone else.
But what to do about the visible patients who lose? Having your IFR rejected is hurtful and frightening for patients, as was demonstrated in a 2015 Channel 4 documentary called “£2 Billion a Week”, about funding in the NHS. The programme followed patients on their care journey, showing the decisions being taken, how much they cost, and giving examples of what that money could have bought elsewhere. It was an inflammatory and divisive bit of media, but it pulled these issues out and aired them publicly, in a way that felt like progress.
One question that arose in the discussion surrounding IFRs was how we can mitigate the pain of rejection for patients who have their IFRs turned down. Could we talk to the patient and their family, explain the decision making process? My feeling is not. I don’t think there is anything anyone could say that would make this easier or better for them, particularly where life or death conditions are concerned. Knowing that there is a treatment, convincing yourself that that is what you need, and having it blocked… Nothing is going to make that seem reasonable. I suspect that in this situation the only response is to let yourself be hated. Someone has to be the bad guy, why not us?
The natural concern is that being the bad guy could eventually lead to government pressure and policy change, which would be disastrous. My response is that the people we need to convince are not the people living through being on the wrong side of a decision, but those who could be there - the general public. The family will be furious, but if their neighbours and acquaintances understand the bigger picture, then the snow storm won’t build to an avalanche.
This requires better communication on all sides. My blog posts are taking on a bit of a theme at the moment. That’s because everywhere I look this feels like the biggest problem we face. Change is happening, and interest in where spending on the NHS actually goes is building - unfortunately not always in a helpful way, what with the constant tabloid focus on the non-problem of health tourism.
What’s needed is probably more discussion of fairness in the health service, and why our budgets are limited, more transparency about how money is spent, and better resources for local decision makers to start implementing evidence-based decision making. A walk in the park, then!