Patients are increasingly wanting to understand and engage in using their health care data: to play a stronger role in managing their own illness and wellness. As we live longer we will each need to look after more illnesses.
Modern healthcare needs to make better use of patient data to optimise its care services and to reuse the data for research. This is a major challenge as health record information can be of variable quality and often cannot be shared between clinical teams. Accessing data and reusing it can be difficult and complex, resulting in the slowing down of both clinical research and improvements in quality.
Research is needed to enable healthcare systems to improve the quality of care they provide, to make care safer, more integrated and to reduce delays in receiving a diagnosis and treatment. Research into diseases needs to be accelerated and to be more efficient. Prevention of disease, earlier diagnosis, better designed patient care pathways and faster access to innovative treatments are all parts of an essential journey towards smarter healthcare.
It is the ambition of i~HD to engage more strongly with patients about how they see the value of their data being used, how they wish to use their own health data, and what they would like our safeguards to focus on protecting. The perspectives and engagement of patients is central to establishing a trustworthy ecosystem for reusing health data for research and for learning health systems.
We are launching a new initiative to promote greater societal awareness of how health data can be used to advance our understanding and to improve health and care, and the ways in which these uses can be undertaken in trustworthy ways.
In order to optimize our dissemination and communication activities towards patients and the public, i~HD as a multi-stakeholder association is well placed to collaborate with international and national patient associations and other stakeholders that are connected to patients. We keen to build new connections with patient organisations and the public, and to work with other complementary European organisations in the area of patient engagement. Please get in touch if you would like to work with us.