At NATCAN we value and place great importance, on ensuring that the voices of those with lived experience of cancer is at the heart of everything we do.
All ten audits sitting within NATCAN are committed to engaging widely with charities and experts involved in cancer care, and to delivering for patients and their families, as well as healthcare professionals and the health service.
The acronym ‘PPI’ stands for ‘Patient and Public Involvement’ and refers to activities which involve engagement with patient and public representatives. You will see that this is also sometimes referred to as ‘Patient and Public Involvement Engagement’ (PPIE).
We have worked closely with a wide range charity partners representing the different cancer types within NATCAN, to recruit PPI representatives for each of our audit PPI Forums; ensuring representation of types across stage/type of cancer, treatment received, geographical location, age, gender, and ethnicity.
“I was diagnosed with stage 4 lung cancer out of the blue in 2019. I didn’t realise at the time I would be one of the lucky ones who would buck the statistics and live much longer than was typical, but when I realised this, I was keen to take the opportunity to give something back and find some way to help other cancer patients.
I was able to take early retirement in 2023, which allowed me time to pick up several patient advocacy roles. My background in information technology and interest in data drew me to work with the National Lung Cancer Audit Patient and Public Involvement Forum at NATCAN, when the opportunity arose.
The patient voice needs to be front and centre in the cancer treatment conversation, and I am convinced that the PPI teams in NATCAN ensue that this continues to be the case.”
Duncan, PPI Chair for the National Lung Cancer Audit (NLCA).
PPI activity at NATCAN
The members of our PPI Forums carry out a wide range of activities, including:
- Advising on the language used in the patient and public versions of each audit’s annual State of the Nation report
- Undertaking an advisory role in the development of the NATCAN web pages to ensure that patients and the public can easily find relevant information
- Presenting at a range of online and in-person events, providing a vital patient view
- Raising awareness of our work in both patient and clinical communities by contributing to newsletters and social media outputs
PPI engagement with NATCAN’s communication activities
Some of these communication activities which our PPI representatives have contributed to are shown below.
In recognition of Blood Cancer Awareness Month, Frank Burroughs, chair for the Non-Hodgkin-Lymphoma Audit’s (NNHLA) PPI Forum, prepared a short blog about using data, which was shared on NATCAN’s web pages and across social media channels.
Read Frank’s blog here
Frank Burroughs, PPI chair for the Non-Hodgkin-Lymphoma Audit’s (NNHLA).
Christine, a member of the National Pancreatic Cancer Audit (NPaCA) has lived experience of pancreatic cancer and recently kindly worked with members of the audit team, and in collaboration with partners at Pancreatic Cancer UK, to record a short film. The film encourages Cancer Alliances in England to engage with NPaCA’s Quality Improvement (QI) work; which is focused on increasing treatment rates.
People Involvement Network
Having established PPI Forums for each of our ten National Cancer audits, we formed a new ‘NATCAN wide’ PPI Network at the end of 2025.
This work of the Network, is being led by the PPI Forum chairs, ensuring the voice of people with lived experience of cancer is the driving force behind the new Network. Following consultation with members of the Network, we agreed to call it ‘People Involvement Network, or to use its acronyms, PIN.
PIN is a community of like-minded individuals, with extensive and varied, professional and personal experience, coming together with a shared vision. It expands on and compliments the work being undertaken by the audit specific PPI Forums; increasing our capacity to generate positive change and to keep the patient voice at the heart of all that we do.
Membership currently consists of the chairs of each of the National Cancer audits and a small number of representatives from across NATCAN. Plans are to expand the Network in the future, to include wider representation with other stakeholders.
PIN provides a collaborative space whereby all the individual audit PPI Forums sitting under the umbrella of NATCAN can come together and share good practice. It is a space which provides an opportunity for making new connections, facilitating the sharing of experiences across different cancer types, promoting cross-audit working and enabling engagement across a broader range of NATCAN activities.
“The Network will be invaluable in helping to facilitate collaborative working and the sharing of good practice between audits, and in supporting new work on the horizon for NATCAN. I am looking forward to seeing what possibilities arise because of this important new initiative.”
Lesley Goodburn, PPI Chair for the National Pancreatic Cancer Audit (NPaCA).
use MY data is the only independent UK movement of patients, relatives and carers focussed on the use of patient data, to save lives and improve outcomes.
The key aspect in being part of use MY data is support for our vision, mission and aims, published here – www.usemydata.org.uk.
The benefits of joining include:
- It is free to join, is free to take part in and is free to leave
- Being part of a community, which works to build confidence in the use of patient data to save lives and improve outcomes
- Receiving regular updates about patient data matters including engagement opportunities, event information, patient data developments.
- The opportunity for your voice to be heard directly on patient data consultations and matters
- Exclusive access to Members educational sessions on patient data topics, specifically run for our Membership on topics suggested by Members
- Priority access to use MY data’s public events
- Receiving personal guidance & support on patient data matters and queries
The best way to sign-up is via to the Join Us! section of the use MY data website. For further information/any queries, please contact [email protected].
Clinical Audit Awareness Week 2026
The Healthcare and Quality Improvement Partnership (HQIP), recently announced details of this year’s Clinical Audit Awareness week. “Clinical Audit Awareness Week (#CAAW26) is back for 2026, aiming to improve and save lives by promoting and celebrating the critical role of clinical audit and data-driven healthcare improvement.” (HQIP, 2026).
The week’s activities includes several patient-focussed sessions. Click here for more details.
National Patient Data Day, 24th June 2026
This year, use MY data will be marking National Patient Data Day 2026 on Wednesday 24th of June with two public webinars, celebrating the use of patient data across the four nations of the UK – the success stories, the achievements and the opportunities ahead, and debating how to overcome the challenges to ensuring our health data is used to save lives and improve outcomes for all.
Across the month of June, a number of organisations will join in with their own events under the National Patient Data Day umbrella to showcase and celebrate their work with patient data for the benefit of all. This will include a webinar being delivered by NATCAN on Monday the 22nd of June, 2026, entitled, ‘Embedding the patient voice in the centre of a national quality improvement’, register to attend this free to attend event, via this link here.