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Hi there.

Last time I was talking about the new initiative in the UK of providing information for those with cancer in the form of tailored Information Prescriptions. (To read this post click here).

As promised, this time I am going to begin addressing the issues that are raised by this initiative. As with any new way of doing things, there are always advantages and disadvantages. These need to be weighed up and concerns addressed to ensure the best possible results from the new scheme.

So what are the concerns?

First there is the issue of how they will work in an appointment. How will the health professionals find the time to select the relevant pieces of information, when our health services are already stretched to breaking point? If they are sitting and going through information on a computer, will this lessen the human interaction which is vital to feeling confidence in your doctor (you may have experienced this issue in other situations, where sometimes receptionists seem more interested in their computer screen than in you)? Who will have time to go through the information with you to make sure you understand it and what it means for the person with cancer, and the rest of the family?

Secondly there is the issue of what happens next. I believe that although giving information is a good first step, it’s simply not enough. Information has an emotional impact (as you may notice if you have ever read the side effect warnings which come with most prescription drugs). With cancer this is particularly so. Often information is given slowly, to give time for all concerned to get used to it. But if the prognosis is not good (for instance), giving tailored information may reduce the possibility for hope. This in turn can lead to depression, which has been shown to worsen survival chances. So is there a possibility of too much information? These issues may be able to be addressed, but only by trained professionals having the time to spend with individuals exploring their concerns. This needs to happen all the time, not just if someone asks for that help.

Lastly there is the issue of privacy and confidentiality. There are many cases where someone with cancer chooses not to pass on all the information they have to others in the family. (I believe, though I don’t know for sure, that this was the case with my own mother.) But if someone has been handed a highly tailored set of information about their cancer, and a family member asks to read it, where is their option for keeping things to themselves then? It is all there in black and white and you know that what is there reflects how things are. As a family member you may think ‘Fantastic! I don’t want there to be any secrets.’ But do you have a right to that information? Should you have a right to know? This is like opening a can of worms, because there are many reasons why someone may choose to restrict the information they pass on. I’d love to know what you think. Have you experienced such a situation yourself? Let me know in the comments, and next time I’ll look into what the reasons are for this kind of secrecy, the effects it can have, and what should be done to address the issue.

See you then,
Anne

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