Public Involvement Resources

Evidence

The Healthwatch reports library tool provides access to thousands of reports produced by local Healthwatch and includes a number of cancer related reports –  https://www.healthwatch.co.uk/news/2019-12-03/thousands-peoples-views-all-one-place

National Patient Experience Cancer Survey – https://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey

NHS Patient Experience Framework – https://www.gov.uk/government/publications/nhs-patient-experience-framework

Health Foundation – Measuring patient experience – https://health.org.uk/publication/measuring-patient-experience

Kings Fund  – Exploring the impact of patient experience data in NHS hospitals in England – https://www.youtube.com/watch?v=DH5ihe8F-yg

International Journal of Public Health – What will it take to get the evidential value of lay knowledge recognised?  http://www.northerncanceralliance.nhs.uk/wp-content/uploads/2019/06/Lay-knowledge-paper.pdf

Communication

NHS England – A guide to making information accessible for people with a learning disability – https://www.england.nhs.uk/wp-content/uploads/2018/06/LearningDisabilityAccessCommsGuidance.pdf

Bengali community focus group with Macmillan Cancer Support – The main objectives were to understand what currently happens, and what could improve this e.g. materials available in their own language, in different formats and available in different settings. Click here to view report.

Inequalities

Macmillan – Cancer Inequalities Report – https://www.macmillan.org.uk/documents/getinvolved/campaigns/appg/britainagainstcancer2009/cancerinequalitiesreport.pdf

CRUK – Smoking Inequalities Report – https://www.cancerresearchuk.org/sites/default/files/stop_smoking_inequalities_2018.pdf

Macmillan project report. Improving cancer services and experiences for people with a learning disability in the North East and Cumbria (October 2017 – April 2019) – Learning Disability and Cancer Project Report

MacMillan Cancer and Healthwatch on Tour: Awareness of cancer services among Young BAME Residents in Blackburn with Darwen. Click here to view report.

Understanding LGBT views on cancer and cancer services in Fylde. Click here to view report.

Capability & Capacity

Kings Fund Film – How does the NHS work? – https://www.youtube.com/watch?v=DEARD4I3xtE

Kings Fund Document – Patients  as partners – https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/Patients_as_partners.pdf

Kings Fund Film –  Patient and Public Engagement – https://www.kingsfund.org.uk/events/patient-and-public-engagement-where-next

Finance and expenses information – https://www.england.nhs.uk/participation/resources/finance/

NHSE Policy for Patient & Public Involvement – https://www.england.nhs.uk/wp-content/uploads/2017/08/patient-and-public-voice-partners-policy-july-2017.pdf

Systems & Tools

NHS England – Bite size guides to participation – https://www.england.nhs.uk/publication/bite-size-guides-to-participation/

NHS England – Bite-size Guides to Patient Insight – https://www.england.nhs.uk/publication/bite-size-guides-to-patient-insight/

Scottish Health Council –  Involvement Toolkit – http://www.scottishhealthcouncil.org/toolkit.aspx

Best practice guidelines – for effective engagement of people with a learning disability in projects – Download Best Practice Guidelines

The Manchester Community Engagement Toolkit is a practical guide to carrying out community engagement – ManchesterCommunityEngagementToolkit

Piecing Together Patient Engagement – a short film, produced by Macmillan about the benefits of engaging people affected by cancer in the development, of cancer services – Click Here

Toolkit for setting up a cancer patient and carer group – Click Here

Commitment & Accountability

NHS England – Bite size guide to governance for participation – https://www.england.nhs.uk/wp-content/uploads/2014/03/bs-guide-govern-part.pdf