Kidney disease costs the NHS £1.45bn each year

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Kidney Patient Involvement Network

Kidney Patient Involvement Network (KPIN)

A partnership across organisations, charities and academic institutions and a British Renal Society Special Interest Group.
www.kpin.org.uk

Who we are

We are a partnership across organisations, charities and academic institutions and welcome all patient and clinician members from across the UK and all backgrounds of kidney care.

We are jointly led by Professor Paula Ormandy who is Professor of Long Term Conditions Research at the University of Salford and British Renal Society Vice President (Research) and Mr David Coyle, a kidney patient and Patient Partnership Lead for NIHR Devices for Dignity.

Professor Paula Ormandy
Professor Paula Ormandy
David Coyle
David Coyle

Our aims:

We are committed to quality public involvement and engagement (PPI/E) and  work collaboratively in initiatives to improve standards and develop patient leaders of the future by:

  • Increasing the impact of the patient and carer voice through meaningful involvement.
  • Developing and embedding quality standards for the involvement of patients and carers.
  • Creating 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.

Our challenges and evidence gaps:

Evidence gaps:

  • What does good patient involvement look like? - although patient involvement is perceived as a crucial element to research, QI and governance committees, many clinicians and patients do not know how to get involved or what quality involvement looks like.
  • What is the impact of PPI/E? There is limited longitudinal evidence that demonstrates the difference PPI/E has on research, quality improvement, service delivery or health policy. We need to evaluate involvement initiatives, clinician and patient experiences to understand where PPI/E works best, how and for whom.

Challenges:

  • Increasing the number of different patients involved - only a small number of patients nationally have the skills, confidence and opportunities to be involved in different projects and different committees – we need to expand and develop ways to widen participation and provide equitable access to involvement opportunities, so we hear different patient perspectives.
  • Increasing the number of expert patient leaders – for those people who get involved we need to provide training to develop their skills and confidence to raise the patient voice and create a sustainable expert patient resource for the future.
  • Peer support - people involved in projects and committees often work in isolation and lack peer support.

 

Ongoing workstreams:

  • Generating a responsive database of patient and carers to connect stakeholders, communicate opportunities, and disseminate information to increase knowledge and understanding of the value and impact of engagement.
  • Producing PPIE training packages to build capacity and increase understanding.
  • Creating a social media peer support network for patients and professionals to share experiences, discuss priorities and influence agenda setting.

Our impact and achievements:

  • Creating a kidney community culture where PPI/E is valued and embedded throughout our work.
  • NIHR INVOLVE test bed pilot (May 2018-June 2019) – examining the applicability of INVOLVE quality standards to practice and generating a ‘how to’ guide for PPI best practice.
  • Developing an online repository of best practice resources to guide and support practitioners www.kpin.org.uk.
  • Established as British Renal Society Special Interest Group.
  • Affiliation confirmed with UK Kidney Research Consortium.
  • KPIN invited speakers at NIHR Patients First Conference.
  • A number of KPIN workshops held.
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Get in touch

For more information and to find out about getting involved as a patient or researcher, contact: