Working in co-production with our patients

Cancer Services are committed to involving patients from the very beginning and ensuring their voices are heard. We aim for patients and staff to work together to improve services and outcomes for cancer patients.

This involvement means empowering people to identify the right questions that need to be asked, rather than simply commenting on decisions that have already been made. It’s about sharing power between those who use and those who deliver the service, ensuring that skills and resources are applied effectively and are embedded throughout the whole service.

Illustration of five puzzle pieces with text on

Text: 'No engagement. No contact from services. Voices not heard.', 'Information. Being informed about what is happening by services.', 'Involvement. Being given the opportunity to have your say in a cariety of ways.', 'Co-production. Meanginful decision making for the entirety of a project.', 'Embedded co-production. Meaningful decision making on a shared journey throughout the whole service.'

What is co-production?

Co-Production: Patients and Staff Working Together to Improve Cancer Services

Link: https://www.youtube.com/watch?v=PsqFA-PqiPw

Co-Production: Patients and Staff Working Together to Improve Cancer Services video transcript

00:09 - 00:12

Staff need to get that we see things they don't see

00:12 - 00:14

and that we know things they don't know.

00:16 - 00:18

We want to asked how much we want to be involved

00:19 - 00:20

in decisions about our care.

00:21 - 00:25

I want to be treated as the person. I am more

00:25 - 00:28

than a bunch of malignant cells.

00:31 - 00:35

Co-production involves people from the very beginning

00:35 - 00:40

so that they can identify the right questions that need to be asked,

00:40 - 00:44

than commenting on something that is already decided.

00:45 - 00:50

Co-production also sharing power between those who use the surveys

00:51 - 00:58

and those who deliver the surveys for skills and resources used appropriately

01:01 - 01:04

Co-production is a way of patients and clinicans working together

01:04 - 01:08

to improve care by acknowledging and using the experience of patients

01:08 - 01:13

to help inform service provision. It's a way of validating the lived experience

01:13 - 01:18

using the skills and valuing the assets of people who have experienced cancer first-hand.

01:19 - 01:23

It's about making sure that the patients, carers, their families have a say

01:23 - 01:27

and feel aknowledged and empowered during and after any cancer treatment.

01:27 - 01:30

It gives them the opportunity to be more equally involved in decisions that

01:30 - 01:33

affect them. Nothing about us, without us.

01:34 - 01:38

I was part of a big MDT where we were trying to improve the outcomes

01:39 - 01:43

and reduce length of stay, but also improve the patient experience.

01:43 - 01:47

So we were part of a big project, and in order to do this, right at the very beginning

01:47 - 01:52

we held some patient focus group meetings. So with all this information that

01:52 - 01:57

we had collated, we actually incorporated a lot of it into some of our proposals

01:58 - 02:03

in the business plan. These included things like a prehabilitation clinic

02:03 - 02:07

where patients were able to come and speak to a dietition, a physio

02:07 - 02:11

and a specialist nurse to help prepare them better for their operation,

02:11 - 02:15

talk to them about what to expect during the inpatient stay,

02:15 - 02:19

as well as what to expect during the early few weeks after they're discharged.

02:20 - 02:25

The thing about being a carer is that you're not the patient, you're just an afterthought,

02:26 - 02:30

if you're a thought at all. But cancer diagnosis for someone you care for

02:30 - 02:33

deeply affects you, and that should be taken into account.

02:34 - 02:38

I want to be told the options and understand what's going on.

02:38 - 02:42

I don't want to just be told what's going to be done to me without understanding

02:42 - 02:44

why and what other options are available.

02:46 - 02:50

Co-production is also patients and clinicians working openly together to improve

02:50 - 02:53

cancer care. Improvements are made through identifying needs

02:54 - 02:58

and helping to find solutions to those needs. Through participation in projects

02:58 - 03:02

and strategies, patients contribute to positive change at many levels.

03:03 - 03:06

Co-production is an equal partnership between patients and clinicians,

03:06 - 03:11

from addressing an issue, to project design, to deliver, all voices are valued.

03:12 - 03:16

Co-production is about involving patients in the design of services

03:16 - 03:18

and facilities, not just sometimes, but all of the time.

03:19 - 03:23

What we've found is that co-production isn't easy, but when it works it brings

03:23 - 03:25

real benefits to both patients and staff.

03:25 - 03:30

For example, we involved patients in the design of our new oncology outpatients facility,

03:30 - 03:34

and the result of that is the design much more closely meets the needs of both groups.

03:34 - 03:38

So co-production gives us confidence that our service offer is based on what our

03:38 - 03:42

patients actually want and is co-designed and delivered with them.

03:43 - 03:46

A really good example of that is that our patients asked us to write our outpatient

03:46 - 03:50

letters to them and copy the GP, rather than the other way round.

03:51 - 03:55

The result of that is that the letters are much clearer and much more useful for the

03:55 - 03:58

patients as a summary of what they've been through in clinic, and in fact

03:58 - 04:01

the GP's have found them much more useful as well.

04:01 - 04:05

What we've found is that co-production isn't easy, and in fact if it is easy then it

04:05 - 04:09

probably isn't working very well. But when it works, it's brillint for all involved.

04:10 - 04:14

We're just like you; staff are patients, patients are staff.

04:14 - 04:21

We want you to take a genuine interest and understanding. Talk with us,

04:21 - 04:06

listen to what we have to say, and tell us about yourselves too.

Co-production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation. Co- production acknowledges that people with ‘lived experience’ of a particular condition or healthcare pathway are often best placed to advise on what support and services will make a positive difference to their lives.
Coalition for Personalised Care

Co-production is a way of patients and clinicians to work together to improve care by acknowledging and using patients’ experiences to help inform service provision. It validates the lived experience by using the skills and valuing the assets of people who have experienced cancer firsthand. It ensures that patients, their carers, and their families have a say and feel acknowledged and empowered during and after any cancer treatment. It provides the opportunity for patients to be more equally involved in decisions that affect them - nothing about patients without patients.

Co-production also means patients and clinicians working openly together to deliver cancer care improvements by identifying needs and helping to find solutions. Through participation in projects and strategies, patients contribute to positive change at many levels.

Co-production is an equal partnership between patients and clinicians, from addressing an issue to project design and delivery. It is about involving patients in the design of services and facilities - not just sometimes, but all of the time.

What we have found is that co-production isn’t easy, but when it works, it brings real benefits for both patients and staff. Co-production gives us confidence that our service offer is based on what our patients actually want and is co-designed and delivered with them.

Staff and patients sat round a table talking and looking at leaflets

Success stories of working in co-production with patients

Campaigning for clinic letters to be written from clinicians directly to patients, with copies to GPs
Contributing to the redesign of the Oncology Outpatients Department
Contributing to the development of a new finger-prick test for patients to detect the possibility of neutropenic sepsis
Designing and updating the contents of information packs for new cancer patients
Co-designing and contributing to the Cancer Service webpages on the CUH Website
Co-designing the content and starring in the Welcome to Cancer information videos which can be found on the CUH cancer webpages

Patient co-production opportunities

East of England Radiotherapy Network Patient Co-Production Volunteer Group

Help shape the future of radiotherapy services by sharing your personal experiences of radiotherapy. By taking part, you can:

Influence how current and future services are designed and improved
Ensure that patient and carer voices are at the heart of the work delivered by the East of England Radiotherapy Network

You do not need to have any skills or experience, other than having used radiotherapy services. All meetings are held online and via email.

Would you like to find out more about this group, or let us know if any adjustments would help you get involved? Please Email Alison Bowman.

Cambridge Cancer Research Hospital (CCRH) Patient Advisory Group (PAG)

The Patient Advisory Group (PAG) offers a way to get involved in the Cambridge Cancer Research Hospital (CCRH) project. If you are interested, or have experience that could be beneficial to one of our workstreams, which include workforce and

transition planning, as well as sub-working groups covering inpatients, outpatients, day case and administrative spaces – please get in touch by emailing CCRH.

CCRH website (opens in a new tab)

Cancer Research UK

The Cancer Research UK Cambridge Centre is a partnership between the University of Cambridge, Cambridge University Hospitals NHS Foundation Trust and Cancer Research UK. If you are aged 16 or over and are interested in contributing to CRUK’s vital work, please complete the form via the link below to register your interest.

CRUK - Join our Patient and Public Involvement Groups (opens in a new tab)

East of England Cancer Alliance

This group is made up of local people who have experience of cancer, either their own or through friends and family members. They meet virtually once a month, with occasional face-to-face meetings through the year. Patients and former patients listen to educational talks by various experts, share their views and experiences, and provide valuable perspectives to help shape cancer services.

Get involved: East of England Cancer Alliance (opens in a new tab)