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Putting the Patient Voice at the Centre of the Health Investment Debate (Guest blog)

Barbara Stegel

Barbara Stegel, MSc is Secretary General at International Forum of R&D Pharmaceutical Companies, EIG. She has...
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Ahead of FarmaForum’s 15th Strategic Conference “Value of Innovation 2026”, held in Ljubljana under the title Health is Wealth – We Have the Choice to Make, FarmaForum organised a dedicated breakfast meeting with patient advocates and representatives of patient organisations. The aim was simple but important: to ensure that the patient perspective was not only present at the conference but also actively shaped the discussion.

The breakfast provided an open space for patient representatives to reflect on what the conference theme means in practice for people living with the disease, their families, and the organisations that support them. While the broader conference focused on health as a driver of social resilience, economic productivity, and long-term prosperity, the patient advocates brought the discussion back to its most essential point: behind every statistic, waiting time, delayed diagnosis, or postponed treatment, there is a person.

Participants underlined that innovation creates real value only when it reaches patients in time. New medicines, diagnostics, digital tools, and care models can transform lives, but their impact depends on timely access, well-organised care pathways, and meaningful communication between patients, healthcare professionals, and decision-makers. The discussion, therefore, focused not only on innovation itself, but also on the conditions needed for innovation to deliver value in people’s everyday lives.

A strong message emerging from the breakfast was that patients should be recognised as active partners in shaping healthcare solutions, not merely as recipients of care. Patient organisations have a unique understanding of how the system works in real life — where delays occur, where information is missing, where coordination fails, and where solutions could make the greatest difference. Their experience is therefore essential for designing policies that are both effective and human-centred.

The discussion also highlighted the need for earlier diagnosis, better integration of care, improved use of data, and more systematic involvement of patient organisations in decision-making processes. These elements are not only important for better patient outcomes; they are also key to a more sustainable and resilient healthcare system.

The conclusions from the breakfast were later brought into the main conference discussion by Tanja Španić, President of Europa Donna Slovenia. She emphasised that the patient voice must be more systematically embedded in healthcare decision-making and that patient organisations can act as an important bridge between patients, healthcare professionals, and policy-makers. Her contribution ensured that the patient perspective became an integral part of the broader strategic debate on health, innovation, and societal value.

By connecting the patient advocacy breakfast with the main conference programme, FarmaForum aimed to demonstrate that discussions about health investment must always include those most directly affected by healthcare decisions. Health is indeed wealth — but this value can only be fully realised when patients are recognised as partners in creating a more responsive, timely and innovation-oriented healthcare system.

The initiative reflected FarmaForum’s continued commitment to dialogue, partnership, and patient-centred policy-making. It also reinforced one of the central messages of the Value of Innovation 2026 conference: investing in health means investing in people, in society, and in a more resilient future.