Voices: Stories of Patients is a new concept that began in 2013 with a documentary journey into the inspirational lives of four patients with non-transfusion-dependent thalassemia (NTDT) from India, Italy, Lebanon and Thailand. The purpose of this international exploration, called NTDT Voices, was to portray NTDT patients’ daily lives in order to raise awareness of the unmet needs of the NTDT community worldwide. The reporting team - a photographer and writer - spent several days in each country, meeting, interviewing and photographing patients, along with their doctors and their families.
This experience allowed a better understanding not only of universal disease-related issues, but also of individual challenges. The documentary gave voice to those who felt the impact of the disease on their daily life, lifestyle choices and life expectations. The resulting communication – presented online and in exhibitions in several countries - was based on emotional intelligence and cultural understanding.
This approach, documenting individuals’ life journeys with art photographs and audio testimonies now serves other patient communities that share similar issues in terms of awareness, recognition and care.
Breathing a new, refreshing vision into local, regional and global calls to action, Voices: Stories of Patients not only allows patients to be key actors in discussions; it also highlights the multiple issues each disease brings.
Voices: Stories of Patients offers a collection of compelling stories told by people who have crossed paths with challenging diseases: Non-Transfusion-Dependent Thalassemia (NTDT), Sickle Cell Disease (SCD) and Myelodysplastic Syndromes (MDS). Bringing together patients in many countries, along with their families and their physicians, this platform articulates a call to action and empowerment, in the hope of providing better perspectives for patient communities around the world.
Human ties and dialogue at work
Voices: Stories of Patients was made possible by teams that collaborated across geographical boundaries to offer this global journey:
--• Project managers interacted with physician experts who showed strong dedication: first in drawing willing patients into the project, then in taking part in interviews, talking about their experience, and finally in providing scientific highlights and ways to talk about the disease, to contribute to better understanding.
--• Local advisors and coordinators worked together to enable experts and patients in each country to understand the nature and importance of this project, arranged the preliminary encounters, and provided onsite reporting.
--• The interactions between patients, the interviewer and the photographer gave birth to the rich and sensitive material that you can now discover on the Voices websites.
Throughout its development, the project Voices: Stories of Patients has been a collaborative experience, conceived to give sensitive, human perspectives on the disease, in order to allow better understanding, and generate action.
Partners: Novartis and the Iron Health Alliance
Novartis Oncology established the Iron Health Alliance in 2011 as a way to help improve the standard of care for people diagnosed with chronic iron overload. The Iron Health Alliance is a partnership that raises the standard of care of chronic iron overload by supporting education, diagnostic access, and patient management for optimized outcomes.
The Iron Health Alliance provides support through three core pillars of care to improve outcomes:
--• Increased awareness and knowledge of diagnostic methods to detect and measure iron overload
--• Increased awareness of anemias
--• Increased awareness of the importance of treatment adherence
It is as part of this dynamic that the Iron Health Alliance has given impulse to Voices: Stories of Patients, allowing Novartis to sponsor web documentaries that foster global awareness.
This project would not have been possible without:
--• The NTDT patients, SCD patients and MDS patients, whose full names will not be disclosed in respect for their privacy, who agreed to share their experience as part of this project
--• The NTDT, SCD and MDS experts whose personal and scientific involvement was remarkable,
--• Those who enabled the encounters to take place in the best conditions, particularly the local Novartis teams, whose support made this project possible.