Transcript UKACR United Kingdom Association of Cancer Registries Developing a Patient Information Leaflet about the National Cancer Registration Scheme M Roche, L Hovard, J Botha, C.

UKACR
United Kingdom Association of Cancer Registries
Developing a Patient Information Leaflet
about the National Cancer Registration
Scheme
M Roche, L Hovard, J Botha, C Carrigan, S Parkes
O
C
I
U
OXFORD CANCER
INTELLIGENCE UNIT
Dr Monica Roche
UKACR Conference
29 September 2004
UKACR PATIENT INFORMATION
LEAFLET TASK GROUP
Hannes Botha (Chair until January 04)
Monica Roche (Chair from January 04)
Sheila Parkes
Chris Carrigan
Joan Austoker
Kate Saffin
Linsey Hovard
What did the Task Group do?
•Reviewed the available patient information produced by
other national cancer registration schemes
•Drafted a leaflet with input from the UKACR
Executive Group and others working in cancer
registration
•Submitted the leaflet to both Plain English and
CHIQ
What did the Task Group do?
• Tested the leaflet with groups of cancer patients and
parents of children with cancer and with some
representatives of national cancer patient groups
•Identified the main areas of concern raised by patients
and carers
•Revised the leaflet to reflect the feedback from
patients and others including the Patient Information
Advisory Group
KEY POINTS FROM PATIENT FEEDBACK
CONTEXT
Why now?
What is the legal context?
‘If the scheme’s already up and running why are you doing
this? You’re only just going to draw attention to it and alarm
people you know. If they’re already collecting the
information, why do it? I don’t understand’
‘Which law? ‘A law has been passed … which law? I don’t know’
NEED FOR CLARITY
About the way registries work
About the role of registries
About the benefits of registries
‘It says in the first paragraph that registration is the only way
that we can see how many people are getting cancer. I’m not
sure that’s strictly correct, but I don’t know’
‘If you’re going to make the claim that there is some basis
for determining the causes of cancer through the registry,
then you have to show the linkage and what value that
produces’
CONCERNS ABOUT PRIVACY
What information is held by registries?
Who might you give it to?
Will anyone contact me?
‘But they must want your name then. If they’re saying they’re recording it against
the right person they must need your name mustn’t they?’
‘… when they ask for an address are they specifically … I mean just asking your
area or is it specifically …’
‘If it’s anonymous is it given to the registry in the anonymised format and if not,
why not?’
‘Those doctors may contact you about cancer research’. Presumably this
means that doctors will be able to access information about patients who would
be suitable for research trials. So they may NOT be ‘doctors involved in your
care’ but rather, doctors who want to recruit patients to the trials they are
running – could the leaflet be open about this please’
CHOICE
Do I have a choice?
Why isn’t the system ‘opt-in’ rather than ‘opt-out’?
Can I opt-in for some parts of the system (e.g. basic
registration) but opt-out of others (e.g. research involving
patient contact?
‘It’s interesting that it’s taken out of the person’s hands, that your husband or
doctor will pass on this information. You’ve just given consent for it to be
done. And so you don’t actually know exactly what’s being put down’
‘Most people volunteer any information they could to be useful but so
long as there’s some opt out clause in there for the very small minority
of people who don’t want to, I think there’s nothing wrong with your
leaflt’
EMOTIONAL IMPACT
Potential for arousing fear or anxiety
Concerns about when and by whom the leaflet would be
distributed
Possibility of a positive impact!
‘People are so stressed out of their minds you know … they’ll ring
alarm bells you know for some people’
‘It makes you see that there is a good point to doing this you know. And
perhaps any anxieties that you had before that would make you think well
no it is for a good reason’.
‘This is just another thing that helps (coming to terms with the diagnosis)
because it looks positive .. Because one of the things they’re always saying is
there’s great recovery you know, the figures are great!’
REVISIONS TO THE LEAFLET
Covering:
Concerns about privacy
Choice
PROVIDING SUPPORTING INFORMATION
Covering:
Context
Need for clarity
How and where will the supporting information be made
available?
Telephone contact via NHS DIRECT or CANCER CHARITY
UKACR WEBSITE
REGIONAL REGISTRIES – contact details will be held by
NHS Direct or Cancer Charity and will be on UKACR website
AGREEING DISTRIBUTION ARRANGEMENTS
WITH CANCER NETWORKS
Covering:
Emotional impact
What are the next steps?
• Finalise the leaflet
• Develop the supporting information
• Agree distribution arrangements and
identify first point of contact for patients
and professionals
• Agree the timescale for launching the
leaflet.