Went to an interesting (but poorly attended, unfortunately) presentation in Aberdeen earlier in the week, about patient involvement in choice and design of treatment programmes. The two speakers were primarily concerned with treating urological cancers, but it was encouraging that they were clearly trying in their research to take more account of individual patients and their peculiarities(!).
One topic of discussion after the presentation was the usefulness of measures of probability in helping patients to decide what treatments to accept. As it’s a University town, several in the audience said that as well as a list of potential outcomes from a treatment (or lack of treatment) they would also like to know the probabilities of different outcomes. So if one outcome is very unlikely, while another is very likely, some of us would find that very useful in making decisions about treatment options. There is apparently another project about to begin in the University looking at precisely this, and the ways of interpreting probabilities to patients who are in most cases unlikely to be familiar with the concept.
I’ve been asked to join a focus group which is helping the researchers to design the study, and would be very keen to hear from folk on here as to whether they think this sort of information would be valuable in discussion with clinicians. (Who, one has to say, are often not that familiar with the ideas themselves!). Any ideas welcome, even if you think this is a silly idea!