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Guidance and tools for public involvement

By the Association of Medical Research Charities (AMRC)
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This page on AMRC’s website contains links to publicly available guidance documents, toolkits, training and other resources to help improve the quality, inclusivity, accessibility and impact of patient and public involvement in research and charity work. The resources have been split into sections for ease of navigation:

  1. Starting public involvement
  2. Standards for involvement
  3. Public involvement training
  4. Reaching out
  5. Types of involvement
  6. Payment for public involvement
  7. Public involvement in basic research and industry
  8. Diverse involvement
  9. Impact and evaluation

 

Supporting PEDRI’s Good Practice Standard 6: Effective involvement and engagement and Supporting PEDRI’s Good Practice Standard 7: Creating a culture of involvement and engagement.

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This resource provides clarity on the definition of transparency and practical examples of its application in health data science to support public trust.
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A Guide to Co-Producing Accessible Health Information

This guide helps public involvement and engagement professionals and researchers to collaborate with the public and patients, valuing their lived experiences to co-create easy to understand information. This ensures everyone equally grasps the benefit of health data.
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How Do People Feel About the Use of Data?

This resource summarises public attitudes toward the use of patient data, based on research studies from 2010 to the present. It highlights key themes, such as support for using anonymised data for health research if there is public benefit, and concerns about industry using the data.
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