The PROMise Community Activist Toolbox is a source of information regarding Patient Reported Outcome Measures (PROMs) in HIV Research & Development (R&D)
Since 2020, EATG has commissioned research under the scope of the PROMise project to analyse the role of Patient Reported Outcome Measures (PROMs) in HIV Research & Development (R&D) and to explore potential contributions by community-based organisations. EATG aims to increase awareness and visibility on the relevance of adequate PROMs for people living with HIV and their development. EATG aims to ensure that community advocates have knowledge on the different PROMs that are being used in HIV R&D and are able to represent their interests towards the relevant stakeholders in the field so that community representatives are involved in all stages of the development of new HIV-specific PROMs.
The PROMise toolbox is primarily intended for community advocates and people living with HIV advocating for stronger consideration of quality of life-related aspects in HIV R&D, treatment and care. However, this toolbox can be used as a resource for all the actors interested in being involved in the process, such as industry, academia or research institutions working in the field of HIV R&D and developing PROMs, regulatory agencies and health policy decision-makers at European and national levels, as well as Health Technology Assessment bodies. In addition, our toolbox might be a source of information for patient communities in other disease areas to encourage them to advocate for more community involvement in the development of PROMs.
This toolbox contains some key resources that might work as a starting point for developing knowledge around basic literacy on PROMs in the HIV Research and Development context.
This initiative has been independently developed by EATG as part of the PROMise Project and is supported by a grant from Merck, Sharp & Dohme.
PROMs: HIV Community Needs and Engagement
1.2 Podcast: Patient-Reported Outcome Measures (PROMs) in HIV R&D with EATG
By: European Patients’ Forum (EPF) & European AIDS Treatment Group
On behalf of EATG, Alain Volny-Anne and Kevin Moody participated to the European Patients’ Podcast, organised by the European Patients’ Forum, for an episode on PROMs in HIV R&D. The European Patients’ Podcast is your source for conversation and news around the world of patient advocacy and empowerment and bring together the leading voice of patient organisations in Europe with 77 members across the continent.
1.3 Webinar: Patient Engagement to design, generate, analyse and decide on Patient Experience Data
By: Patient Engagement Open Forum (PEOF)
On behalf of the EATG, Kevin Moody presented at the April 2021 session of the Patient Engagement Open Forum the findings from the analysis of community needs and recommendations on the importance of patient engagement in PROMs.
HIV & PROMs: Capacity Building for Treatment Advocacy
2.1 PROMs & HIV: Treatment Advocacy
By: European AIDS Treatment Group
This is a series of short videos on PROMs produced by the EATG for the community of People Living with HIV to increase awareness of PROMs, our research on PROMs and in turn, strengthen the community voice in Treatment Advocacy. With these videos, EATG aims to share information and experience to develop knowledge around PROMs for HIV R&D, so that they can be utilised at all stages of HIV R&D, including conceptualisation, development, implementation and evaluation. Module 3 is specifically intended for other patient communities to highlight the potential similarities and differences between PROMs in HIV R&D and PROMs in R&D for other disease areas and encourage other communities to advocate for patient and community involvement.
MODULE 1 – PROMs: Strengthening the Voice of People Living with HIV in Treatment Advocacy
MODULE 2 – PROMs: Patient-Reported Outcomes Measures For People Living with HIV
MODULE 3 – Community involvement in PROMs development: Lessons Learned from the HIV experience
2.2 Virtual Roundtable: PROMise: Strengthening the Voice of People Living with HIV in Treatment Advocacy
By: European AIDS Treatment Group
In December 2021, EATG organised a virtual roundtable to have an open discussion on PROMs and how people living with HIV should be engaged in all processes that affect their holistic health, including treatment advocacy.
2.3 Webinar: Patient-Reported Outcomes Measures
By: European AIDS Treatment Group
In 2018, EATG organised an introductory webinar with Diana Barger (University of Bordeaux) on PROMs. The goal of this webinar was to provide an overview on what PROMs are, which tools are available to measure PROMs and how they have been created, validated and are being used in drug development; market access and the role of community involvement in development processes.
HIV & PROMs: Stakeholder Involvement and Engagement
3.1 PROMs & HIV: Perspectives and Experiences
By: European AIDS Treatment Group
EATG requested from four key people, closely related to the PROMise project, to share their views, thoughts and opinions on what PROMs are and their future.
These interviews involved:
- Brian West, Chair of Partners in Science programme at EATG and person living with HIV for 37 years
- Kevin Moody, Independent Research Consultant
- Caroline Sabin, Professor of Medical Statistics and Epidemiology
- Diana Barger, Post-doctoral researcher University of Bordeaux, Inserm Bordeaux Population Health Research Centre.
What are Patient Reported Outcome Measures (PROMs)?
What is the future of PROMs in HIV R&D?
Articles of Interest
Credits
Rocco Pignata Toolbox Coordination and Development
Fiona Greenhalgh Toolbox Coordination and Development
Apostolos Kalogiannis Toolbox Layout and Production
Sophie Monk Visual Identity and Project Reports Design
Kevin Moody Research Consultant
Christos Krasidis Video Production
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