Patient and Public Involvement and Engagement (PPIE)

Key Considerations:

  • Identifying where patient and public input can most usefully influence a project
  • How to engage people with relevant lived experience of AMR
  • Planning sufficient time, budget, accessibility and support for involvement
  • Communicating technical information clearly and agreeing roles, expectations and confidentiality
  • Understand how feedback informs research priorities, product design and development decisions


Meaningful patient and public involvement can help ensure that antimicrobial research reflects the priorities, experiences and needs of people affected by drug-resistant infections. The resources in this section provide practical guidance on planning and evaluating involvement, identifying and supporting appropriate contributors, and incorporating lived experience into research priorities and product-development decisions. They also signpost to patient networks, charities and advocacy groups that teams could approach for further engagement, insight and support.


Resources

7 resources

Guidance
Patient Focused Medicines Development

How-to guide for patient engagement in the early discovery and preclinical phases

Provides practical, step-by-step guidance for involving patients in early discovery and preclinical research, helping teams identify relevant patient partners and incorporate patient perspectives into research priorities, indication selection and early product development decisions.


Guidance
European Patients Academy on Therapeutic Innovation

Guidance for patient involvement in industry-led medicines R&D

Provides guidance on meaningfully involving patients, carers and patient representatives throughout industry-led medicines research and development. It covers practical considerations such as preparation, agreements, compensation, communication and evaluating impact.


Guidance
The James Lind Alliance

The James Lind Alliance Priority Setting Partnerships

Brings patients, carers and healthcare professionals together through Priority Setting Partnerships to identify unanswered questions and agree the most important priorities for future research. Current Priority Setting Partnerships related to AMR include Healthcare Associated Infections, Sepsis, Community Acquired Pneumonia in Adults and Chronic and Recurrent Urinary Tract Infections.


Patient Advocacy Group
Vocal

Vocal AMR Network

Vocal connects patients, carers and communities in the UK with health research, enabling their experiences to inform future diagnosis, treatment and care. Its AMR Network includes people affected by recurrent infections, long-term antibiotic use or resistant infections. Members can contribute through discussion groups, surveys and other opportunities, sharing their experiences to help improve research into how antibiotics are used.


Patient Charity
AMR Action UK

AMR Action UK

AMR Action UK is a UK patient charity supporting people and families affected by antimicrobial resistance. It provides information and support, funds patient-focused research, helps people with lived experience influence policy and healthcare, and campaigns for practical changes to reduce harm from drug-resistant infections.


Patient Advocacy Group
WHO Taskforce of AMR Survivors

WHO Taskforce of AMR Survivors

The WHO Task Force of AMR Survivors brings together people who have experienced drug-resistant infections, either as patients or caregivers. Members share their experiences, contribute to WHO discussions and campaigns, and advocate for improvements in AMR awareness, patient care, research, policy and funding.


Patient Advocacy Group
The AMR Narrative

The AMR Narrative

The AMR Narrative is a UK charity that supports patients and the public to become involved in tackling antimicrobial resistance. It builds advocacy skills, raises awareness, shares stories and creates opportunities for people worldwide to connect and contribute to AMR discussions and action.