Deliverable 6.1: Guidelines and manual for applying the Health Social Labs methodology

Health Social Laboratories represent an opportunity for project stakeholders to co-design and give feedback on Hereditary research processes and perspective research outputs design, such as the prototype of the interactive data analytics platform and the medical terminology popularization process. They would achieve the latter by helping analyse innovative ideas and perceptions regarding elements such as terminology, technology, and social and ethical issues.

The following manual begins with a brief overview of the concept of stakeholder engagement, its history, strengths and weaknesses, and then delves into the Exploratory Context Analysis conducted with project partners connected to Hereditary Use Cases and its results on the state of: relationships and stakeholders; therapeutic process and clinical activities; technology and research; communication, expertise and policymaking.

The following section, concretely containing HSL guidelines is divided into 7 chapters:

1. Objectives
2. Operations and organisational processes
3. Stakeholders
4. Activities
5. Staff
6. Recording and reporting
7. Evaluation

Each chapter contains specific methodological instructions and guidelines for the realization of the laboratories with necessary forms. Finally, the attached HSL manual Annex contains stand-alone editable versions of all forms, worksheets and presentations provided.