Good involvement of people using PrEP
a collaborative project between PrEPster and AVAC

Good participatory practice (GPP) guidelines have been at the cornerstone of HIV treatment policy, practice and research for over two decades. Recent attention has been focused on how the users – or potential users – of new HIV prevention technologies, such as PrEP, are involved in the development of HIV prevention practice, policy and research.

PrEPster has been at the forefront of pushing for greater involvement of PrEP users in HIV prevention. At the first European PrEP Summit in Amsterdam in 2018, the concept of good involvement of people using PrEP (originally termed ‘Goodipup’) was presented. Further advocacy was undertaken in the AVAC zone at the IAS conference in July 2018 on this issue, with the germination of an international framework for building on these early concepts.

In October 2019 PrEPster and AVAC embarked on a project to consult on and generate international guidelines on good participatory practice of the recipients of PrEP technologies. The project takes the concepts of GPP in biomedical trials to a further level, making the case for GPP in HIV prevention practice, advocacy, policy and research, rather than just biomedical trials.

This concept is based upon an observation that the future recipients of new HIV prevention technologies have largely been silent or marginalized in debates around the development of those technologies. For example, community consultation models on the establishment of preventative vaccines have largely drawn on existing HIV treatment networks, with the ‘end users’ of those vaccines largely excluded.

Building upon and developing the GPP and greater involvement of people living with Aids (GIPA) principles, the project makes a case that greater systematic and coordinated involvement of users of prevention technologies would have positive impact on uptake and roll-out of these technologies. 

This project proposes a two-stage development of these good involvement principles. Phase I (see below) addresses drafting, consultation and development of the principles. Phase II would be an implementation phase of the principles, to which further considerations will be given, as part of Phase I’s consultation process. 

Phase I will be implemented in five stages: 

  • Review current principles and draft a review draft set of principles 
  • Undertake a consultation process of these draft set of principles 
  • Refine and review the principles in light of the consultation process 
  • Undertake a targeted consultation on the final principles document 
  • Develop a process to inform investment in a Phase II implementation strategy 

This project is being lead by people who are using PrEP, those who have recently done so, and those seeking PrEP.

For further information on the project or to be involved in the consultation processes please contact