Richard Norris picIn my last blog (Do we spend too much money on medicines in Scotland?19.11.2017) I looked at the issue of whether we get the right balance in spending on healthcare treatments (assuming there is one). I suggested that whilst it is in everyone’s interest to have a transparent, open and fair system for allocating healthcare resources, this was very difficult to achieve in practice. One problem I mentioned was the issue of what is known as ‘the political paradox of rationing’ and whether this can be resolved.

The ‘political paradox of rationing’ is a phrase that was coined to describe the outcome of efforts made in the 1990s by the state of Oregon in the USA to make publicly transparent decisions about what treatments would be available under the public insurance scheme Medicaid. At the time rising costs meant that less people were able to access Medicaid, and it was felt that it would be better to broaden access by limiting the treatments available under the scheme. The plan was to decide which treatments should be available using a cost benefit formula based on quantitative values for medical procedures, combined with public judgements which would be ascertained through town hall meetings and public opinion surveys. So although expert input was part of the process it wasn’t an ‘expert’ debate in a closed room, but a very public debate with a lot of media focus. In practice however having a very public and transparent debate didn’t lead to a limitation on treatments available, but the opposite – more funding was allocated to healthcare, and there was an increase in the amount of cover provided. So some commentators have referred to this as the ‘political paradox of rationing’ i.e. the attempt to have a public discussion about how to restrict or ration care paradoxically leads to more care being made available because the public tend to be resistant to the idea of rationing. This effect has also been observed in other countries attempting to make explicit and transparent rationing decisions which involve the public.

It could be argued that having an open process helped the public to be more informed about what treatments were available, and enabled a wider debate on what should be covered. Thus, rather than a ‘paradox’, explicit processes can be a good thing, because they can create and sustain public and political support for providing greater resources, which in turn reduces the pressure to make difficult rationing decisions.

In Scotland, there is often public and political concern when there are proposals to change healthcare provision in ways that mean the loss of local services, or when expensive new drugs are not made available through the NHS, even if these decisions are taken on the grounds of clinical and cost effectiveness. Usually the focus of discussions tend to be based on the particular service or medicine being considered, rather than the wider ‘opportunity’ costs. So for example if money is spent on a new expensive drug, this will require making savings somewhere else in the system i.e. it may mean other people not getting hip replacements, or psychological therapies, or having to wait longer for operations. However in a complex system it is sometimes difficult to identify the ‘losers’ from decisions to allocate resources, particularly when those who will lose out are hypothetical future patients, rather than actual real patients now. So often the ‘public view’ that gets publicity is the view of those who stand to gain from having the treatment or service in question, rather than the views of society as a whole, or those who may lose out in the future. Is there a way of understanding or knowing what members of society think if they don’t have a direct interest, and therefore motivation, in making their voices heard? How do we know whether the judgments being made are in accordance with the values society holds?

One way of trying to understand how the public feels about making these choices is called ‘Q methodology’ and there is a lot of work on this currently being done at Glasgow Caledonian University. This approach involves asking a purposefully selected group of people to rank a set of statements in order of preference, and then using statistical analysis to find underlying patterns in the rankings to identify shared views or perspectives. This approach has been used to explore societal perspectives on the issue of expensive ‘end of life’ treatments. It was discovered that society divides roughly in half, with one half believing that the NHS should prioritise treatments that are the most cost-effective, and the other half believing that patient choice is most important and treatments (not only end of life treatments) should be provided, if patients value them, regardless of the cost.  This second view does not deny scarcity but seems to support growing the health budget by reallocating resources from other public spending.  However these findings raise questions about what should be done when, as in this case, there are different, and seemingly incompatible views within society. Technological and managerial expertise cannot be expected to solve this one, and indeed it may be that there is not one right or correct solution.

Is it possible to find some sort of compromise in practice? This may sound difficult but a compromise is inevitable one way or another. So one way we can try and engage with the public in helping find solutions is using what are called ‘deliberative’ approaches. This means instead of asking someone for their initial or instinctive view, they are asked to engage in an ongoing discussion with other members of the public, gathering more information and points of view as they go. The theory behind deliberative democracy (as it is called) is that most of us don’t have the time, the right information, or the inclination to think deeply about all the different issues facing society. This in turn means that the ones who engage most actively on any given issue are not necessarily representative of the broader population, but usually have a special interest to promote. If we recruit members of the population randomly and give them a particular task with the information and resources they need (as we do when we recruit juries to decide on legal cases), then we find out what most people would think if they had the time and resources to develop an informed perspective.

There are a number of deliberative approaches that have developed over the years including Citizens’ Juries (which operate on a similar basis to a jury for a legal trial), deliberative polling (where larger, statistically representative, samples are gathered for a discussion over one or two days), and ‘long form deliberative processes’ (where a random sample of around 30 to 40 people gather for full day meetings spread over several months). There are a number of examples around the world where these processes have been used successfully to tackle difficult public policy areas, including those that involve trade-offs, and where there is no one answer, or an easy technical solution. Such a process may seem a useful way to involve the public in difficult healthcare priority setting issues, but there are a number of caveats.

Firstly, the process does require resource, and this may mean spending at least £20,000 and frequently more. Compared to the billions we spend on health and social care this may not seem much, but finding these amounts in stretched budgets can be challenging. Secondly, there needs to be ‘buy in’ from those who need to implement any decisions resulting from such a process. Sometimes professionals and producer organisations worry about committing themselves in advance to implementing a decision from a process which they may feel is unproven, or unpredictable. The output from a Citizens Jury or other deliberative process may not be binding, but does require to be given serious consideration, otherwise it is not worth doing. Thirdly, even if there has been a deliberative process, an unpopular decision may still encounter strong resistance if there are people who feel they have lost out. However, surely having an evidence base which includes public views gathered in this way can only strengthen a case, even if it cannot guarantee acceptance by everyone?

The Scottish Government has commissioned the Scottish Health Council to run a Citizens’ Jury on ‘Realistic Medicine’ and shared decision making in autumn 2018, so this is not a new approach in Scotland. But it is important to recognise that no one method provides all the answers, and deliberative approaches will, for political and managerial necessity, need to be combined with other forms of engagement and dialogue with public and experts alike. The answers will come from bringing together differing strands and perspectives, developed through a variety of processes.

These are issues on which there is no right answer, but some answers will be more broadly acceptable than others. And issues will need to be revisited when there is new evidence to consider. Soon there will be extremely expensive new medicines and technologies available (indeed some are already here). Examples include Advanced therapy medicinal products, Personalised medicine, Point of care testing, Robotics, Telemedicine and ‘smart pills.’ Healthcare is undergoing a technological revolution. Many of these new treatments don’t have a particularly good evidence base, and yet could make a dramatic difference to the lives of users.

This is not a debate we can leave to professionals or experts. But political and media stories don’t always provide the whole picture or provide space for all points of view. Using ‘Q methodology’ in combination with deliberative processes would give us good evidence about the public’s views on how, as a society, we want to proceed.

Richard Norris is an employee of Healthcare Improvement Scotland but currently working with the Academy of Government at Edinburgh University.