Too much fake news in healthcare: patients demand transparency in exchange for trust
In a world increasingly polluted by fake news 50 health user associations point to the need for crystal-clear communication and raise the bar on the competence and value of partnerships
Communicating with transparency to create trust: 75 per cent of the patient associations that responded to a survey as part of the 2024/2025 Research of the Patient Advocacy Lab (Pal) of the Alta Scuola di Economia e Management dei Sistemi sanitari (Altems) of the Università Cattolica del Sacro Cuore put this at the top of the list of values needed to build a network capable of looking to the future. In a world increasingly polluted by false news, patients indicate precisely this priority. The survey involved 50 associations through focus groups, quantitative surveys and integrated analyses.
The indicators
'We wanted to ask the associations directly,' commented Teresa Petrangolini, Director of the Laboratory, 'what values to focus on to build an organisation with a solid basis for acting to protect people. What emerged was a multi-voice self-reflection that produced a shared list. Without trust you cannot build protection, people empowerment is an important part of an organisation's mission, innovate or die, be sustainable in order to act, without competence there is no advocacy, network to win. A recipe for success, but above all a battery of indicators against which to measure oneself periodically and to correct one's aim'.
The six shared values
The analysis thus revealed six shared values that represent the architecture of association governance today: trust, empowerment, innovation, sustainability, professionalism and networking.
Empowerment, according to 70% of respondents, requires not only empathy with people, but also new skills. The drive towards innovation is a cultural attitude: the ability to listen ranks first with 65% of the responses, followed by adaptation, openness to young people, skilful use of data, and responsible experimentation.
Sustainability, a theme that also strongly affects the world of civic associations, is read in a multidimensional key: economic, organisational, social. The diversification of resources and thus the ability to build alliances, convergence of interests, co-design of interventions, is a theme posed by 70% of the associations.
