Innovative therapies: 20 organisations working to measure the value of treatment

In a country characterised by an ageing population, a rise in chronic conditions and increasing pressure on the National Health Service, the challenge is not merely to make new technologies available, but to recognise and articulate their value. The sustainability of the system, fair and timely access to innovation and, above all, the ability to meet people’s real needs all depend on this decision.

Today, according to recent data from EFPIA’s Patients W.A.I.T. Indicator, patients in Italia wait an average of 14 months to access a new treatment. On top of these waiting times, regional differences continue to create inequalities in access to care. Faced with this situation, a shift in perspective is needed – one that starts with patients and their needs, but also with the system’s ability to measure what creates value throughout the entire care pathway.

A recent international study by CERGAS at SDA Bocconi and Global Heart Hub, involving over 150 patients and representatives of patient organisations, highlights how patient involvement in Health Technology Assessment processes remains limited and is predominantly advisory in nature. Many report that they are involved too late in the process and do not receive any feedback on how their input is being used: a sign that patient participation is still far from being fully integrated into decision-making processes.

The value of care, in fact, goes beyond clinical outcomes and encompasses the patient’s entire life journey: quality of life, independence, continuity of care, impact on families, equity of access, and organisational and social sustainability. This perspective is consistent with the principles of Value-Based Healthcare, according to which value stems from the system’s ability to generate outcomes that are meaningful to patients, by making appropriate use of available resources and orienting decisions towards measurable outcomes. For this reason, decisions on innovation cannot be based solely on clinical and economic evidence, but must systematically incorporate the patients’ perspective. Today, patient organisations are increasingly well-informed stakeholders, capable of contributing knowledge, data, experiences and information on people’s real needs, thereby facilitating a more comprehensive assessment of the impact of health technologies throughout the care pathway.

It is against this backdrop that the “Pazienti in Agorà” project, promoted by Novartis, has been launched; it brings together over 20 associations active in various fields, ranging from oncology to cardiovascular medicine, and from immunological to neurological conditions. Once common priorities have been established, the associations will embark on a collaborative programme with SDA Bocconi focusing on measuring and interpreting the value of care, engaging with national and regional institutional stakeholders, and ensuring patient involvement throughout the care pathway. Projects such as “Pazienti in Agorà” demonstrate how multi-stakeholder collaboration can foster a more value-based healthcare system. The aim is to develop the criteria used to evaluate care, taking into account not only the effectiveness of treatments but also outcomes throughout the patient’s entire journey, quality of life, social and economic impact, and the opportunities offered by digital technology and artificial intelligence.