Johnson & Johnson Innovative Medicine presents the ‘Patient Association Academy’, a model of collaboration between patient associations and civic organizations operating in different therapeutic areas. The project was illustrated today, in the Lombardy Region, during the event ‘The new role of patient associations in the health sector: the Patient Association Academy is born’. The initiative – a note reports – aims to accompany patient associations and civic organizations in a path of strengthening skills and awareness that makes them increasingly strategic and decisive in the definition of health policies, providing them with technical knowledge and tools in line with the current scenario. The path will be divided into theoretical sessions (in person and online) and practical sessions such as, for example, a simulation of a hearing at the Lombardy Regional Council.
A need, that of targeted paths, expressed by the associations themselves during the study promoted by Iqvia ‘Patient Voice’, which saw 96 associations present on the national territory as protagonists. On the one hand, the survey highlights a very active role of associations in the health system: disease awareness campaigns (76%), information activities (65%), support groups (61%), educational activities (47%), networking activities (59%, fundamental for sharing experiences, but also for bringing a unitary and uniform voice). Participation in scientific activities is growing (fundraising for scientific research: 33%, studies on quality of life and economic burden: 48%, scientific publications and editorial projects: 38%); collaboration with hospital centers is frequent (50%), even if the presence and support activities for patients within the departments are still limited and need to be extended (35%).
On the other hand – the study shows – there is a strong demand to continue strengthening skills: 48% of the associations interviewed consider it a priority to acquire communication and relationship skills to foster dialogue with institutions and advocacy activities, while 47% believe it is important to improve project management (programming, processes, measurement KPIs). And again, 45% of patient associations would like more knowledge on new molecules and those under development and 43% on regulatory and legal aspects.
The Patient Association Academy – the note reports – was created with the aim of supporting the cultural change that involves the Third Sector in becoming more of an advocate. The initiative provides growth paths for patient associations and civic organizations, today fundamental interlocutors for the promotion of dialogue and discussion with the actors of the health system, fueling real active listening that contributes to making the health system increasingly efficient and effective in responding to the needs of patients and caregivers.
“The Third Sector has always represented an extraordinary human heritage and high added value skills for the entire Lombardy region – says Elena Lucchini, Councilor for Family, Social Solidarity, Disability and Equal Opportunities, Lombardy Region – It contributes to strengthening and increasing the inclusive and cohesive character of our communities, generating not only an economic value but also a social value in terms of employment, job placement of people most at risk of exclusion – for example people with disabilities – services for the care and assistance of the most fragile categories”.
For this reason, “our Region – he continues – recognizes the role of the Third Sector through dedicated resources and recognizes its increasingly leading role in the decision-making process and in the implementation of regional planning actions in the health and social health sectors. For this reason, patient associations will also be increasingly involved and listened to at regional institutional tables to thus become spokespersons of needs to active subjects. Today’s event is evidence of the value and synergy between public and private for the realization of initiatives that strengthen the ability of territorial services to reach those who, more than others, experience difficulties in accessing opportunities for growth, development and personal well-being. An objective of inclusion that we can only achieve together”.
“Occasions like today’s are essential for patient associations. Having the tools available is the first step to start long-lasting discussions – underlines Emanuele Monti, president of Commission IX Social Sustainability, Home and Family of the Lombardy Region – Institutions also consider it a priority to open channels of dialogue with associations, which work alongside patients and caregivers every day in the territories. While it is true that much is being done in this direction at a central level, the Lombardy Region has always been fertile ground in the process of listening and giving back to all parties, with an ever-attentive eye on the realities of the Third Sector”.
“Better access to care can also be achieved with greater involvement of the Third Sector, which has always been involved in the provision of non-profit healthcare and social services – highlights Carlo Borghetti, member of the III Health and IX Social Sustainability, Home and Family Commissions of the Lombardy Region – However, I would like to underline a new contribution that the Third Sector has been asking to be able to give for some time, rightly so: involvement in co-programming and co-design by the competent bodies. It is on this path that the Regions must move more, in addition to greater overall support for the Third Sector”.
Today’s meeting “in which we present the Patient Association Academy is a very important stage of Johnson & Johnson Week, a week of events and debates to imagine the future of medicine together with all the interlocutors of the health system, and in particular with patient associations – comments Mario Sturion, Managing Director of Johnson & Johnson Innovative Medicine Italia – The Italian health system is changing towards a dynamic and integrated model in which institutions, doctors, patients and caregivers operate increasingly in synergy and in this perspective pharmaceutical companies can play a crucial role. As Johnson & Johnson we want to be an active part of this positive change”.
“According to data released by Ipsos in 2024 – says Monica Gibellini, Government Affairs, Policy & Patient Engagement Director, Johnson & Johnson Innovative Medicine Italia – in the space of 2 years the share of Italians who indicate health and healthcare as the absolute priorities in which to invest for public policies has increased from 52% to 69%. A growing awareness of the importance of this sector for the well-being of society, and which requires skills and synergies between the various actors to ensure its effective functioning. Health institutions are clear about this need and signals of attention are important to increase the level of involvement in decision-making processes in the world of health of all interlocutors and in particular of patient associations”.
“With the project we are presenting here today – he concludes – Johnson & Johnson wants to be a facilitator of this process, through the creation of paths to strengthen the skills of associations to facilitate and make dialogue with the institutions more effective”.
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