Patient Training and Development in Engagement and Involvement

Welcome to the KPIN Training and Development resource

As you are hopefully aware by now, KPIN is very much about helping those kidney patients* who wish to get more engaged or involved in developing Kidney Services through Quality Improvement, Research or Service Development.  We aim to try and achieve this by helping to;

• Increase the impact of the patient and carer voice through meaningful involvement
• Develop and embed quality standards for the involvement of patients and carers
• Create a network to share good patient involvement practice, collate and develop resources, offer peer support, and provide training to increase knowledge and number of patient leaders.

In addition, we hope to be able to support patients that are already involved.

The patient and public involvement we are talking about entails development activities for the direct benefit of patients of being carried out ‘with’ or ‘by’ them, rather than ‘to’, ‘about’ or ‘for’ them.

Patient engagement and involvement encompasses the various ways in which the activity and benefits of Quality Improvement, Research and Service Development can be designed/developed in a two-way process, known as Co-Production. Engagement encourages health care professionals to listen and interact with patients.

Throughout these resources, our aim is to;

• build a library of current and future training and development resources created and used by patients
• identify and where appropriate signpost relevant training, development, links, resources, video’s etc. produced by organisations or professionals to develop patient engagement and/or involvement
• work with other providers to help identify patient aspects relating to patient Learning and Development
• create bespoke online (and eventually) face to face training consisting of 1-2-1 and group sessions supported by reading materials, video’s, eLearning, webinars, blogs etc. A blended learning approach
• Where appropriate, respond to patient needs regarding bespoke topics which could also include through Patient Peer Support

Note:  KPIN is not a training provider and is not in competition with any organisation or entity to provide any training or training materials.  We are however keen to develop, collect resources including training and development materials, that are designed by patients and where it is considered these resources could be viewed and adapted for use by other patients.

Simple themes we may look to provide include;

• Public Engagement/Involvement – The Basics: Learn more about public engagement and involvement including what they are and how you can get involved, including how KPIN can help.
• Roles & Responsibilities and Public Involvement Facilitation: Understand the role you may play in Quality Improvement, Research or Service Development as a kidney patient and how this should be communicated to you as well as what it might be like to take part in, or facilitate, a focus group or Patient Advisory Group discussion.
• Public Involvement ‘The Early days’: Experience patients discuss how and when they got started and compare their different experiences.  They will also discuss various aspects of their engagement/involvement and some of the potential barriers.
• Patient Engagement/Involvement: The practicalities of becoming a member of an NHS Improvement Programme:  Experienced patients and professionals talk about some of the aspects of joining a NHS programme providing tips and tricks as to how to become an ‘impactful’ team member.  This session is an overview and as such can be broken down into a number of smaller ‘bite size’ sessions depending on the needs of those attending.  For example;
  • Understand what being a representative/lead entails and how to feel confident in the role
  • Understand the difference between speaking as an individual and speaking on behalf of others
  • Learn how to prepare and participate in meetings
  • Learn how to manage conflicts of interest
  • Learn how to influence others
  • Learn how to support others to have a voice.
• So, I’ve completed my first programme; now what? Here we discuss and explore how you can be involved during the analysis, dissemination, implementation, and evaluation of your engagement/involvement.

All these themes/sessions will conclude with a discussion on how KPIN can help further.

*The word “patient” can refer to people with kidney disease (receiving advanced kidney care, on dialysis treatment or transplanted), and people who use kidney health services. The word “carer” refers to a family member, friend or other person who helps to support or take care of a person with kidney disease. Alongside this, our information may also be relevant to NHS Professionals and people from organisations that represent kidney patients or carers, as well as to members of the general public. Patient and Public Involvement/(Engagement) is often abbreviated to PPI/(PPI/E)

Potential Training Links

EUPATI
The European Patients’ Academy (EUPATI) is a pan-European multi-stakeholder consortium which trains patient experts on medicines development, clinical trials, medicines regulations, health technology assessment. Additionally, EUPATI offers and maintains the Toolbox on Medicine Development, and coordinates a network of national platforms for patient advocates.

Cochrane Evidence Essentials
Free online resource offering an introduction to health evidence, and how to use it to make informed health choices.