Cancer 52 project ‘Speaking up for Patients”

May 9th, 2016

Our CEO Kate Farnell was delighted to be involved and to contribute to Cancer 52’s project ‘Speaking up for Patients”

Jane Lyons CEO of Cancer 52 says:

While there is no gold standard for patient and patient group involvement in HTA, Cancer52 believes that all parties, including patient organisations – need to share experience learn from each other, evaluate the effectiveness of their approaches to patient involvement and jointly develop best practice. We recommend that:

1. AWMSG and SMG publish their evaluations of CAPIG and PACE in a timely fashion so that others can learn from their experience

2. a conference is organised to bring together HTA agencies and patient organisations to reflect on their experience of patient organisation involvement and to learn lessons from across the UK

3. NICE re-order their agenda for Appraisal Committee meetings to start with patient perspective, with the lead lay member presenting an overview followed by an opportunity for attending patient groups to correct any factual mistakes

There is much interest already in this report and we will I am sure be using it for the foundation of much more work to ensure that the voice of rare and less common cancers is heard by key influencers.

Click here to view the full report

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