Tag Archives: ethics

treatment tailored to genes will kill economic evaluation

At least, kill economic evaluation as currently practised in much of Europe and Canada/NZ/Australia.

I am going to start by sharing an anecdote. A senior collaborator revealed that a submission to NICE, the body that recommends whether medical interventions are cost-effective and should be reimbursed by the British NHS, contained an error. The modelling (decision analytic markov chain monte carlo models) has reached such complexity that there are fewer than 10 people in the country qualified to check any such model. The error was spotted by the author before NICE met to make its final decision – and in any case the error (having a plus where a minus should be), thankfully would not have changed the recommendation. But it could have. And it highlighted the extreme vulnerability here – crucial funding decisions that save lives might be wrong, because there isn’t oversight to check and re-check these models. This is truly scary.

Now these models are being expanded to attempt to quantify whether it is “worth” getting additional information to continue considering a drug or whether we should cut our losses and consider something else.

However, there is a BIG assumption here. Namely, that the average cost and average effectiveness data are correct. (Also that the distributions surrounding these parameters are approximately correct). Unfortunately these assumptions are about to collapse quite spectacularly due to the rapidly falling cost of complete genetic sequencing.

Soon, there will be no such thing as “chemotherapy X for breast cancer” upon which to quantify effectiveness and population cost. Because the population of breast cancer patients no longer get it. Depending on their gene mutations, there may be 10, 20 or 50 different treatment regimes, tailored to whether you have one or both of the two BRCA breast cancer mutations. Effectiveness will skyrocket for people with those genes. Indeed the average effectiveness rate will skyrocket since patients without the genes won’t be given the treatment. So the demoninator of the cost-effectiveness ratio will change radically. The numerator too, potentially, since a bunch of people who are now known not to be helped by it won’t be given it, and people with the gene will be prioritised.

As personalised genetic medicine becomes more common, the number of economic evaluations required will increase exponentially. Uncertainty around estimates will cease to be a nice scatter of points and skew towards zero and one. And whether you are 0 or 1 will be determined by your genes.

How will health economists deal with that? Rates for economic evaluation were recently unilaterally cut by the Australian Federal govt to health economists doing such economic evaluation. Expect this to become more and more common.

Perhaps it is time to simply have a national debate as to which conditions do not deserve more funding as they are currently incurable. Or a re-evaluation according to my post on MMT as to what conditions need more real resources.

Because the incremental approach is going to collapse, it is only a matter of time.

Is it ethical that uninformed members of the public decide just how bad your disability is?

Cross posted from The Ethics Blog

Last time I raised the possibility of changing child health policy because teenagers are more likely than adults to view mental health impairments as being the worst type of disability. However, today I consider adults only in order to address a more fundamental issue.

Imagine you had an uncommon, but not rare, incurable disease that caused you to suffer from both “moderate” pain and “moderate” depression and neither had responded to existing treatments. If policy makers decided there were only enough funds to try to help one of these symptoms, who decides which should get priority?

In most of Europe, perhaps surprisingly, it would not be you the patient, nor even the wider patient group suffering from this condition. It is the general population. Why? The most often quoted reason will be familiar to those who know the history of the USA: “no taxation without representation”. Tax-payers supposedly fund most health care and their views should decide where this money is most needed. If they consider pain to be worse than depression, then health services should prioritise treatment for pain.

Thus, many European countries have conducted nationally representative surveys to quantify their general public’s views on various health states. Unfortunately Swedish population values were only published last year, almost two decades after the first European country published theirs. Although late, these Swedish population values raise a disturbing issue.

Suppose the general population is wrong?

Why might this be? Many people surveyed are, and always have been, basically healthy. How do they know whether depression is better or worse than pain? In fact, these people tend to say pain would be worse, whilst patients who have experienced both say the opposite.

The Swedish general population study was large and relatively well equipped to investigate how people in ill health value disability. And, indeed, they do value it differently than the average healthy Swedish person.

So is it ethical to disenfranchise patients in order that all citizens, informed or not, have a say?

Why not use the views of patients instead?

Well actually the stated policy in Sweden is that the health values ideally should come from the individuals affected by the health intervention (patients). So Sweden now has the information required to follow its own health policy aims. Perhaps it’s time politicians were asked if it is ethical to prioritise pain over mental health, just because various general populations thought this is so.

As a final thought, I return to the issue of “what funds healthcare”? You may be surprised to learn that the “general taxation” answer is wrong here too. But that strays beyond health care and ethics and into the dark heart of economics, which I will therefore discuss elsewhere next week!

ethics blog update coming soon

Sorry my follow-up piece for the ethics blog didn’t appear last week. I was ill.
Hopefully it will appear this wednesday.

In other news, my conference attendances this year will largely be within Europe:
(1) Maastricht in mid June for a conference on risk
(2) The Nordic health economics conference (Uppsala)
(3) Milan in late September for the “Mind the Risk” group.
(4) The IAHPR conference in St Louis, Missouri, USA in October.

I don’t intend to attend any of the “big” health conferences as recently I have not found them helpful or collegiate, or in one case the programme simply doesn’t look designed to grow the field.

I will be giving a seminar on Monday 13th April which will actually be a practical session enabling researchers to set up their own Case 1 Best-Worst Scaling studies, at least as a paper questionnaire or as an electronic attachment to an email. Attendance is primarily for researchers within CRB but let me know if you want to attend and I can make arrangements for a few more people to attend, if necessary.

For contacting me, please use my UU email – terry dot flynn at crb dot uu dot se – my UWS email has blanked, maybe permanently, not sure if my honorary appointment there is over or not!

thoughts on a new discipline

It has been very refreshing working in a centre that specialises in a different discipline of medicine to that which I am used to. Research ethics and bioethics is a very relevant and complex field that neither policy-makers nor the public are really full up to date with.

Yet what I have enjoyed is that new collaborators in this field are open to new methods to get people to think about these issues (like discrete choice experiments). They don’t feel threatened, they don’t make spurious criticisms to buff up their ego. They recognise that we can be greater than the sum of our parts. It feels great.

My last blog was a cross-post from the ethics blog that my centre produces and there will be follow-ups. I have already seen a spike in hits to both the centre’s own blog and my own, following that post, which is great. Many of the upcoming postings both here and there will concern attitudinal and philosophical issues in issues to do with both the beginnings and end of life.

CRB ethics blog

This is a plug for a blog hosted by my Centre (the CRB) and edited by a colleague, Pär Segerdahl.
The Ethics Blog specialises in ethical issues surrounding treatment, both biogenetic treatments and wider medical ones.

Pär writes well for the general audience and it is a good source of material and research for health economists and people from other non-ethics disciplines who have been working in their own “silo” and perhaps are unaware of the work that has already been done concerning issues like prioritisation in health care 🙂

I will write two posts for the blog: the first, on Wednesday 18th March, will discuss how findings from a project I’ve been involved with in Australia suggest teenagers are being disadvantaged in health care. The follow-up, a week later, will go on to discuss the wider issue of “whose values” in determining health care priorities, with a particular focus on the Swedish example. Sweden, as I mentioned last week, has a truly remarkable approach to this that differs from most other western countries…however, in practice it has followed their methods and there is potential for a big discussion on what it should be doing if it is to follow its stated aims. Stay tuned!

friday the 13th

Well it is Friday the 13th. The only bad things to happen were involvements with the Swedish Tax System….which were really bad enough to make the day annoying.

Anyway in other news the Head of Centre, plus several of us from the Centre, are going to Kassel in Germany on Sunday for the first workshop of the “Mind The Risk” project.

Lots of interesting presentations about the ethical, legal, philosophical, quantitative and qualitative issues in incorporating risk into patient decision-making, particularly in bio-genetic issues. I was invited at the last minute, to provide (I hope) useful comments. I hope I justify my attendance!

We are getting LOTS of funding success at the moment so should be adverts going out for PhD students, postdocs and programmers soon. Fancy coming to a fun city with snowy winters, but not TOO snowy? 😉