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Developing a Patient Information Leaflet about the National Cancer Registration Scheme

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. Dr Monica Roche UKACR Conference 29 September 2004. UKACR PATIENT INFORMATION LEAFLET TASK GROUP.

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Developing a Patient Information Leaflet about the National Cancer Registration Scheme

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  1. 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 Dr Monica Roche UKACR Conference 29 September 2004

  2. 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

  3. 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

  4. 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

  5. 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’

  6. 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’

  7. 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’

  8. 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’

  9. 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!’

  10. REVISIONS TO THE LEAFLET Covering: Concerns about privacy Choice

  11. 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

  12. AGREEING DISTRIBUTION ARRANGEMENTS WITH CANCER NETWORKS Covering: Emotional impact

  13. 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.

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