What is KPIN?

The Kidney Patient Involvement Network (KPIN) is a network of individuals, kidney (renal) organisations and charities committed to quality patient and public involvement and engagement (PPI/E) who are willing to work collaboratively on initiatives to improve standards and develop patient leaders of the future.

What is patient involvement?

When we refer to ‘patients’, we also mean carers and family members of those affected with kidney disease. Some organisations also use the term ‘public involvement’ or ‘public and patient involvement’ abbreviated to PPI.

‘Involvement’ can mean anything from giving feedback about your local dialysis unit or joining  a committee, to advising on a project or helping design a research study.

For patient involvement to be meaningful it needs to make a difference to the lives and experiences of the service users involved – i.e. kidney patients and their families.

How can I join?

There are two different types of membership – patients/carers and professionals. This allows us to tailor the information we send to you.

I am a patient/carer, why should I join KPIN?

KPIN will provide you with access to a wide range of involvement opportunities that you can choose to get involved with. This could include:

• Joining a committee or local kidney patient association
• Providing product design feedback
• Taking part in a research projects
• Volunteering for a renal unit.

If you are new to patient involvement, we will provide training and support to help you feel confident that your contribution is valuable, and that your involvement is a meaningful and positive experience.

If you have prior experience of patient involvement, we will provide you with the opportunity to share this experience in order to help others new to involvement.

I am a professional, why should I join KPIN?

If you are new to patient involvement we can provide you with training and support to develop your projects.

If you already have experience, we can help you to access a more diverse patient audience and connect you with various support organisations.

 What happens if I join KPIN as a patient/carer?

• The membership form asks you for information about your experience, treatment and areas of interest. This will allow us to tailor the opportunities we send to you.
• Your details will be kept on a secure database that is hosted by our partners Kidney Care UK.
• We will send you a welcome email which explains how we work and the type of opportunities you may be contacted about.
• When a researcher sends us details of an opportunity for patient involvement, we will check our database and, if you match their requirements, email the details onto you.
• The frequency of these emails will depend on the number of opportunities we receive and your choice of involvement activities.
• When you receive an involvement opportunity you can decide if you are interested in taking part. There is no commitment – it is entirely your choice. If you are not interested, you can just ignore the email. If you are interested, you can contact the researcher directly to find out more information.
• As well as involvement activities, you can also choose to receive a monthly newsletter and/or information about any training events.
• You may also like to join the KPIN Facebook group where patient/carers involved in different activities can discuss their experiences and support each other.

What happens if I join KPIN as a professional?

• The membership form asks you what information you would like to receive including updates on new resources, training events and our monthly newsletter. This will allow us to tailor the opportunities we send to you.
• Your details will be kept on a secure database that is hosted by our partners Kidney Care UK.

 How will you contact me?

We will contact you by email.

You can opt-out at any time or change your preferences using the online form

You can contact us at any time by email: info@KPIN.org.uk

 We look forward to you working with you.