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Published Guidance

Selected publications

The following can be read by patients and professionals. National Standards for Public Involvement in Research – developed by a UK-wide consortium to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which Read more
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Communicating with patients

Communication is an essential part of patient involvement

Providing information to patients is not new. If you’ve ever been involved with a survey or research project, you will be familiar with ‘patient information leaflets’. However, these are often inadequate Read more
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Training for Patients

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 Read more
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Role Descriptions

Generic Role Description for any type of group

Download/view role description general Word doc

Patient Advisory Group Role Description – example from SHAREHD

Download/view Role Description (word) Download/view Role Description (PDF)

Patient and Carer Group Person Specification – example Read more

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Using Social Media

Involving patients through social media

Social media can be a cost-effective and include way to involve patients. Use social media to:
  • Raise awareness
  • Ask for input on your project or study
  • Conduct research
  • Promote participation
  • Disseminate results and outcomes
  • Read more
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Understanding the jargon of patient involvement

Don’t worry if you don’t understand the jargon! You should be given explanations of terms and abbreviations – and don’t be afraid to ask. Rather than give you a lengthy glossary, we’ve focused Read more
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Research Publications

Aitken et al 2019 International Journal of Population Data Science 4:1 Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise Read more
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Involving patients in research

Patients are involved in a wide range of research

Resources for patients and researchers

NIHR Guidance on Roles and Responsibilities for Public Co-Applicants in Research (Jan 2019) to help:
  • Researchers wanting to include public co-applicants in a study
  • Public Read more
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Case studies

Examples of best practice

We’re building a library of best practice. Do you have any examples or case studies to share? If so, contact us.
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