Our Involvement Principles
About Prostate Cancer UK
Prostate Cancer UK is the largest men’s health charity in the UK. We have a simple ambition – to save and improve the lives of men affected by prostate cancer through funding research and supporting men and their families. We invest millions into research to find better ways to diagnose and treat prostate cancer; we work tirelessly to spread the word about men at risk and offer specialist support to people living with the disease. Through shifting the science over the next 10 years to focus on radical improvements in diagnosis, treatment, prevention, and support, we will stop prostate cancer being a killer.
Our commitment to Involvement
We believe that the involvement of people who have lived experience of prostate cancer significantly improves the quality and outcomes of our work. An individual’s first-hand experiences of the disease, as someone who has been diagnosed, or anyone with relevant lived experience such as a family member, carer or loved one is uniquely placed to help shape and deliver our work, adding value at all stages of the process.
Involvement is a unique way to actively collaborate as equal partners to improve the lives of those living with the disease.
We cannot achieve our mission…
- as a source of support to men with prostate cancer and their families
- as an organisation that funds and conducts research
- as an organisation that fights for change in the NHS
…..without involving people with lived experience of prostate cancer.
What do we mean by Involvement?
“People with lived experience shaping or influencing the aims, values, and
activities of our organisation. It involves sharing power, and doing things with,
rather than to or for, people.”
We have an obligation to ensure that we use our time and resources in the most efficient way.
All of the involvement opportunities we create and promote will be designed to help us deliver our strategy and our business aims.We are publishing these principles to guide our involvement work. These principles set out what individual patients, service users and members of the public can expect when they work with us in this way, so they have a consistent experience.
We describe the role of anyone taking part in our Involvement activity as a Public Contributor. This is our term to describe their role in our work and we do not wish to label any individual.
Our Pledge
1. We will be clear about why we are involving people.
Anyone collaborating with us will understand the reasons for the types of activities
they will be involved in.
They will have good information to make an informed choice about whether they work with us.
We will use plain language for communications of involvement plans and activities.
We will be honest and transparent about the contribution we want Public Contributors to make, and what they can influence.
As there are boundaries to involvement, we will be clear about how this differs from volunteering or raising awareness, for example.
For any piece of involvement work, we will set out our needs and expectations an organisation, as well as the benefits to Public Contributors.
We want to involve a wide, diverse range of people and introduce new voices rather than work with the same individuals on every opportunity.
2. We will be flexible and work with people to let them shape how they are involved.
We will work with Public Contributors to plan their involvement, assess their experience, and give them an active role in measuring the success of projects they are a part of.
We will listen and account for what Public Contributors identify as the right level of involvement for any projects we propose.
We will offer a range of ways to get involved, which means people working with us can make the best contribution, maximising their strengths and passions.
We may need the involvement of people with specific experiences and backgrounds, therefore, not all opportunities will be suitable for everyone.
3. We acknowledge that there are barriers to involvement.
We recognise that not everyone starts from the same place, and some people experience greater barriers than others in getting involved. These can be:
- physical and environmental barriers of access, safety, and transport
- ways of working that risk excluding patients and the public
- resources – in terms of time and finances - experienced by people with work, caring, education, or childcare commitments.
- stigma attached to talking about prostate cancer.
- people’s perceptions - of us an organisation and of the health system - based on their previous experiences.
We also acknowledge that there are groups and communities who have been underserved by health services, research, and the voluntary sector.
We recognise that there are groups who require different methods or styles of communication, distinct from more traditional channels and formats.
4. We will “close the loop” on the outcome of a person’s involvement.
We will keep Public Contributors informed about how their comments, ideas and suggestions are taken forward.
We will have channels in place for Public Contributors to supply feedback. We will clearly explain and publicise the difference someone has made and make sure they are credited.
We will report on our involvement activity to build evidence showing the difference that it makes to our work.
5. We will listen to Public Contributors to learn from them so we can improve our involvement work.
As an organisation, we will reflect on how our involvement strategies are progressing, and where we need to change or improve.
We will ask Public Contributors to share their experiences to influence future planning and change.
We will evaluate how involvement is working for us, and for Public Contributors
6. We will recognise the contribution, ability and time of service users and patients.
As well as crediting the contribution of Public Contributors, we will also, in line with good practice, offer reward and recognition where appropriate.
- Developing a policy for Remuneration for Involvement
- Offering a gesture of thanks in the form of a payment, where appropriate, in a fair, consistent, and open way.
- We recognise that there may be reasons why someone is unable or unwilling to accept payment. This will always be their choice - they may wish to accept payment for some activities and not others under this policy, or none at all.
- Refunding all out-of-pocket expenses
- Where payment is not appropriate, recognising contributions in another way.