Putting patients at the centre – start to finish

People affected by the neglected diseases we focus on are represented at every stage of our theory of change: our work to understand their specific needs, concerns, and preferences is essential to DNDi’s success in all facets of the medical innovation process. Alongside our strategic review, we have advanced efforts to consolidate our two decades of experience in needs-driven, patient-centred R&D and streamline our approaches to patient and community involvement in DNDi decision-making. What does patient and community-driven innovation mean for our teams?

Patients’ views and perspectives inform our strategy and planning on a host of critical fronts. For example, we engage patients at the earliest stages of the drug discovery process to develop target product profiles to ensure that resulting treatments align with real-world requirements and expectations. When designing protocols for new clinical trials, we strive to understand what patients themselves expect to achieve from treatment – such as the ability to return to work, reduce pain, or eliminate visible lesions – so that we can measure these outcomes quantitatively as study endpoints alongside established measures for safety and efficacy. Their views are essential for mitigating potential challenges that may hinder patients from participating in trials and for ensuring that patient information materials, including informed consent tools, are easy to understand and culturally appropriate for specific study settings. Our Executive Board’s Patient Representative serves as a voice for people directly affected by neglected diseases and helps guarantee their needs and interests are centred at all levels of decision making.

From embedding patient and community engagement champions in all of our projects to ensuring robust engagement throughout project planning, conduct, and evaluation, DNDi is redoubling our efforts to maintain the active, meaningful, systematic, and sustainable involvement of patients, caregivers, and communities.

Leveraging our strong global footprint and well-established links with communities and local partners, DNDi is establishing regional Community Advisory Committees to help streamline our efforts and ensure success in the context of our diverse disease portfolio and multiple societal and cultural contexts in which we operate.

We launched our first committee in New Delhi, India to support our programmes in Asia in April 2024 and advanced preparations to replicate the approach for our programmes in Africa and Latin America. Comprised of people with lived experience with neglected diseases in each region, advocates, researchers, caregivers, and educators, members bring the background and training needed to deliver on the committee’s important mandate, which includes providing strategic guidance and feedback on the alignment of research activities with community values and expectations, fostering collaboration and engagement between DNDi and the patients and communities we serve, and ensuring they have a central voice in how we work, the decisions we make, and the challenges we choose to prioritize – together.

Medical innovation should begin and end with the people it is meant to serve. We are deeply grateful to the inaugural members of our first Community Advisory Committee and to all our partners who help make neglected patients the driving force behind our shared progress.