The World Hepatitis Summit (WHS) 2024, held from 9th to 11th April, spotlighted the pivotal role of community-led services in the global fight against hepatitis. Among the voices contributing to this discourse was Katrin Schiffer, director of the Correlation–European Harm Reduction Network (C-EHRN). Katrin’s participation in a plenary panel focusing on the power of community-led services in elimination underscored the significance of community-based monitoring activities in advancing the agenda of hepatitis elimination. Katrin’s presentation also underlined some of the main challenges faced in the C-EHRN Monitoring activities and approaches to overcome these.

At the core of WHS 2024 was a commitment to a multi-stakeholder, multi-sector public health approach, uniting diverse actors from civil society, policymakers, the private sector, and academia. Organised by the World Hepatitis Alliance with the support of the Ministry of Health of Portugal, the summit aimed to translate aspirations into action, driving tangible progress towards the elimination of hepatitis.

The session in which Katrin Schiffer participated explored the value of community-delivered services to the people they serve and to the health systems they support, highlighting best practices in the design and implementation of services, and how by working together communities and healthcare systems overcame the challenges of implementation to build trust and maximise impact. Katrin’s presentation focused on the importance of investing in civil society-based monitoring and data collection, introducing the C-EHRN Monitoring activities.

Why is it important to invest in civil society-based monitoring and data collection? 

• Civil Society Monitoring serves as a vital accountability mechanism, holding governments accountable by independently monitoring and collecting data, and examining the efficacy and impact of policies and programs. 
• It complements official data by providing up-to-date grassroots-level insights on developments and trends. The intention is not to duplicate existing data collection efforts from EU agencies such as the ECDC and the EMCDDA, but to complement that with civil society perspectives and information that may not be captured by official channels.
• Civil Society Monitoring identifies gaps in services and policies, thus catalyzing targeted interventions. The data collected identifies gaps that may not be apparent from official data alone, which can be used to call for action and advocate for improving the implementation of programs and policies, based on the needs of the community, including people who use drugs.

What kind of challenges do we face when it comes to monitoring?

Challenge 1: Keeping a balance between science and community needs

Among the challenges is the delicate balance between scientific rigour and community needs. C-EHRN recognises that striking this equilibrium necessitates a nuanced approach that tailors monitoring methods to the unique needs and dynamics of the communities we work with. 

It’s about finding the spot where monitoring methods meet scientific quality standards while being practical and feasible for those working directly in the field. The aim is that data collection is accurate, reliable, relevant, and done in a way that respects and responds to the needs of People Who Use Drugs, being meaningful to the communities we serve.

To respond to this challenge, C-EHRN will comprehensively review our monitoring methodology this year. The objective is to develop an enhanced monitoring framework and a set of indicators linking to HCV and essential harm reduction services.  This new framework will allow longitudinal and cross-sectional comparisons. An external scientific expert will support this review in close cooperation with our internal monitoring team, the focal points, and the scientific advisory board.

Challenge 2: Limited resources for monitoring

The data collection for the Civil Society Monitoring of Harm Reduction in Europe is realised with the support of the Focal Points (FP), members of the C-EHRN. They are the backbone of the monitoring and our network, serving as national reference points for gathering data and information about harm reduction-related issues.

Our Focal Points collect data on a voluntary basis, which is time-consuming and comes on top of their regular work, requiring commitment from both the individual Focal Points and the related organization, which is willing to support and invest additional resources. Therefore, resource constraints are a serious obstacle, impeding the scalability and sustainability of monitoring efforts.

The Focal Points also value their role as Focal Points, as being a Focal Point is more than collecting data and information:

• FPs are provided with tools, information, and training to support their work and potential advocacy activities at the national and local levels. 
• The FP role can be used as a quality label and FPs can use the C-EHRN Focal Point Branding in their communication and advocacy.
• Being a Focal Point means being part of a bigger community and providing the opportunity to exchange and share information with other members and FPs.
• FPs can actively contribute to the focus and the methodology of the monitoring framework, ensuring that monitoring reports and results support their practical work. 

Challenge 3: Sustainability of the Monitoring 

Ensuring the longevity of monitoring initiatives requires diversifying funding streams and exploring alternative financing avenues. C-EHRN is supported by an Operating Grant from the EU4Health Programme, which has provided us with the means and resources to develop and implement network and monitoring activities in the past years. Although we hope for continued financial support, this remains uncertain. Against the backdrop of uncertain financial landscapes, the imperative of sustainable funding mechanisms cannot be overstated.

Challenge 4: Disseminating findings to the policy level

The dissemination of findings to the policy level emerges as a pivotal imperative. Beyond data collection, the ultimate goal is to effectuate policy change, bridging the gap between research outcomes and actionable policy insights. We aim to shed light on gaps in service delivery and emerging drug trends, ultimately driving positive change in policies and practices.

C-EHRN recognises that many of our focal points and members may not have the resources or expertise for advocacy work. This is why we are rolling out an Advocacy Mentorship Programme in 2024, an initiative providing support and training to effectively advocate for policy change at both local and national levels. From webinars to face-to-face trainings, we’re committed to building the advocacy skills of our community members.

In addition, we are launching a city initiative to foster collaboration and support between cities, policymakers, civil society representatives, and affected communities. This platform will serve as a space to address local challenges, explore practical solutions, and promote innovative drug policy approaches. By working together, we can amplify our advocacy efforts and drive real change in communities across Europe.

Stay tuned for the streaming of the session and delve deeper into the discourse shaping the global response to hepatitis! On this note, we’d also like to bring to your attention the Global hepatitis report 2024: action for access in low- and middle-income countries, launched by the World Health Organization on the 9th of April, which you can access here.