Huntington’s disease is a rare hereditary neurological disorder that affects certain areas of the brain and leads to various symptoms, including involuntary (choreatic) movements that worsen slowly, intellectual decline and a variety of psychological symptoms. The first symptoms usually reveal itself between the 35th and 45th life year.
To improve the infrastructure for diseases with low volume and high complexity, such as Huntington’s disease, new national care and knowledge infrastructures are created. This infrastructure consists of regional centers of expertise, target group centers of expertise and a knowledge center. To fulfil the criteria for such an infrastructure, a knowledge agenda (prioritized topics) needs to be formed to guide the research that will be stimulated and executed by the knowledge center.
This project aims to set research priorities for a knowledge agenda in consultation with relevant stakeholders, including healthcare professionals, researchers, people with Huntington's disease and their families. The agenda-setting trajectory is not only instrumental, but also a means of accelerating the building of the infrastructure. It allows those involved to learn about each other's perspectives, including the underlying norms and values that underpin the care and knowledge infrastructure, and to align objectives.
Our approach is based on the Dialogue Model. The Dialogue Model is a widely used and validated participatory methodology for developing knowledge agendas that offers room for innovation and creativity in the involvement of stakeholders. All relevant stakeholders, including patients, relatives, researchers and healthcare professionals, are consulted in a structured and phased manner about topics they consider important. These topics are combined and prioritized in a dialogue, resulting in one shared knowledge agenda that reflects the perspectives of all stakeholders.
The Athena Institute is co-steering and co-facilitating the agenda-setting trajectory. We support the knowledge center throughout the process and advice on how to design the trajectory based on our experience with the dialogue model. In addition, the Athena Institute studies how the process contributes to network building and alignment of stakeholders’ objectives.
Lessons and outcomes
The knowledge agenda (Dutch), a joint publication of the Athena Institute and the Huntington KennisNet Nederland, shares the 14 most prominent topics that emerged from dialogues with stakeholders. The challenges of behavioural and physical changes are recurring themes, as well as the need for broader knowledge sharing among all stakeholders.