New to Patient Involvement

Are you new to patient involvement?

Whether you are a kidney patient, a health professional or researcher, you might need a bit of help to get started.

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. But you don’t always know where to go for information, advice and support.

Health professionals and researchers

You are increasingly required to and want to involve patients more. When new to patient involvement 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 turn to patients and patient organisations you’ve involved before – resulting in a small number of people 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.

What is patient involvement?

First, when we refer to ‘patient’, we mean not only patients, 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’.)

Begin by either browsing our KPIN Resources or the links below.

Getting started as a patient:

NHS England has created a helpful ‘participation’ hub of information and ways to get involved at national and local level 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.)

Getting started 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.

Getting started 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.