New to Patient Involvement

What is patient involvement?

Firstly, when we refer to a “Patient“, we mean not only patients themselves, but also carers and other family members. “Involvement” can mean anything from giving feedback about your local dialysis unit to being a co-applicant in a clinical research study. (Note that some organisations also use the term ‘public involvement’ or ‘public and patient involvement’.)

Involvement, engagement and participation  

Involvement is activity being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

Participation is where people take part in a projects, research or service design.

Engagement is where information and knowledge about projects, research or service design is provided and disseminated.

(adapted from INVOLVE 2012) 

Kidney patients

You tell us you want to be more involved in research, quality improvement, service design and policy. You want to have an equal voice with health professionals and contribute your experience, skills and ideas, to help improve health outcomes for all kidney patients. However, you don’t always know where to go for information, advice and support.

Health professionals and researchers

You are increasingly required to involve patients more and really want to do so. However, you’re not always well supported by your hospitals or institutions or don’t know where to find resources relevant to renal projects. Often, for convenience, you might find yourself turning to patients and patient organisations you’ve involved before – resulting in a small number of the same people being repeatedly invited to engage across different initiatives.

KPIN has been set up specifically to provide kidney patients and renal professionals with a range of resources and support to help everyone who’s new to patient involvement or who wants to engage more effectively.

How can I get started?

As a patient…

You’re already in the right place! KPIN is a growing network of patients and carers with varying levels of experience who have a desire to be involved and to perhaps work with Health Care Professionals (HCPs) and associated organisations to help influence service design and delivery (through Quality Improvement and or Research).

Co-production is and excellent opportunity for patients to work alongside HCPs to help them improve our treatment and services to ultimately allow us to have a better Quality of Life.

For an example of co-production at work please click here

As a researcher…

We recommend reading the INVOLVE briefing notes for researchers. INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research.

As a health professional…

The King’s Fund (2015) published a useful guide to building ‘collaborative relationships among health and care professionals, patients, service users, carers and communities‘.

The Scottish Health Council supports NHS Boards to carry out their public involvement responsibilities.

We are keen to establish KPIN as a network where patients help one another through the provision of information, advice, guidance and support via a variety of means including Peer Support and some basic involvement training. If you are interested and have experience you would like to share or offer or, you want to be involved but don’t know where to start, then why not become a member (click here) and/or drop us an email via

KPIN is also looking to collate kidney related involvement opportunities (see here) and NHS England has created a helpful participation hub of information and ways to get involved at both national and local levels in all aspects of health care, including patient safety, patient experience and health outcomes. Ask your doctor, nurse or GP if there are opportunities or groups you can join.

If you’re interested in research, we recommend reading INVOLVE (2017), Starting Out – essential information for members of the public getting started in involvement. (Published by INVOLVE, Southampton.)

Skip to content