Helping patients: beyond treatment
To find out how to provide help and support beyond medication to people with a Rare Neuromuscular disease and their safety network.
An Ethnographic Study with relevant targets (patients and their families, specialists and medical professionals) to understand their context and the impacts of a Rare Neuromuscular disease in the personal, social, medical and support system (services) dimensions of patients and their families.
Before entering new therapeutic areas, it’s important to deeper the understanding of one disease from the patients’ perspective. While treatments are being developed and before they are launched in the future, Roche aims to know the reality and impact of this disease.
Translate the challenges of the everyday routine to reach opportunities for the improvement of their quality of life and independence.
Desk research to understand the medical and social context, especially in other countries.
Empathetic facilitators within the network by building bridges between patients, doctors, families and other stakeholders.
Deep dive in the community through interviews, day-to-day diaries, workshops, participative and non-participatory observations.
Map opportunities, translate challenges and provide updated references of solutions to improve patients’ quality of life and independence.
RESEARCH AND FINDINGS
Search for scientific and non-scientific information about the medical context of the disease, the international community around it – especially on Social Media, and Benchmark of support services and stakeholders.
23 in-depth interviews and conversations with patients, close family, teachers, employers, doctors and social advocates that allowed us to have a deep understanding of the challenges these people face every day, from the moment of diagnosis to, for example, finding a job or even death.
Whatsapp diaries with 7 families and caregivers for a week. These diaries were a way of following these families on everyday tasks and routines, opening the door to their lives.
A workshop with the parents of younger patients, that opened a fruitful and sensitive discussion about the way society, medical and support services are not accessible for these families. It was a way for the team to verify findings and learn new insights on specific topics, through a group conversation.
After visiting three cities in Portugal – Porto, Viseu and Guimarães – the team had the chance to participate in 5 moments of the daily life of patients and caregivers. We observed their daily lives at home, at work and at leisure.
After the research project, With Company provided a Psychodrama Session to help the Research Team process all the sensible information of the project and its impact on their personal and professional life.