After ten years of judging the PEN awards, I was invited to give a keynote speech at PENNA 2022. Having worked in Patient Experience and Safety for 12 years I thought I should do something different. Telling my story to a large audience was certainly different.
After my speech, I spoke to a number of organisations who were looking for help with various projects. One of these organisations was a patient group from the North East and North Cumbria who were presenting a new patient led service improvement initiative led by patients for patients.
They proposed to be the voice of cancer patients in the North East and North Cumbria with a view of sharing best practices and improving services. They were active in the communities they serve and collected patient and carer experience survey data and patient stories on paper collating and sorting the feedback by hand and passing the information to Trusts the NCA and other interested bodies. They were supported well by their Cancer Alliance and the Trusts.
Their work was carried out by volunteers and quite labour intensive. Tori, the organisation’s Chairperson, was keen to move the group forward with a view to becoming a Charity at some point in the future.
My daughter Anna is a data analyst for the NHS and on my return from the event we discussed the possibility of creating a digital survey tool alongside NCV. Anna designed an outline idea which we discussed with Tori.
By the summer of 2023, we had a sample survey which we demonstrated to selected Trusts. The tool maps the patient survey back to Don Bewick’s 6 dimensions of care and for the first time provides Trusts with a meaningful metric that is that is truly patient led. The tool works on standard iPads and is conducted by trained volunteers who are all former patients or family of cancer patients. Once complete the survey is submitted and uploaded to the cloud via Microsoft secure UK based servers, where virtual machines handle the data and carry out the processing so that we hold no identifiable information on local devices. Finally, this data is transformed within Power BI to produce dashboards and reports for individual Trusts, as well as data packs for the ICB and NCA.
We are pleased to say that in November 2023 Northern Cancer Voices became a registered Charity in England and Wales. This brings a number of different challenges, including finance.
Our live trial will be starting in February 2024 and we are really excited about the insight that we can give. We are also presenting the tool to the National Cancer Team to get their view as we feel that this is the first time a patient ‘experience of care’ metric will have been designed and in use.
To find more about Northern Cancer Voices and the work they are doing, please head to https://northerncancervoices.co.uk/