The world of patient associations has a strong habit of dialogue with industry, which often supports its active role towards patients and institutions in promoting adequate care policies.
According to Teresa Petrangolini, who is director of the Patient Advocacy Lab of the High School of Health Systems Management (Altems) at the Catholic University of the Sacred Heart and an expert facilitator of citizen participation, this is normal in a country where advocacy cannot count on financial or planning support from the public side.
We asked her how the relationship between industry and patient associations can be made more fluid and effective.
What needs emerge from patient associations regarding dialogue with the world of the drug industry?
The relationship between industry and associations has grown considerably in recent years but must be based on a set of good practices. First, companies should have a less casual relationship with associations.
It is necessary to overcome that exclusively instrumental approach which, for example, sees companies turn to the associative world when an obstacle emerges in the registration process of a drug: problems with which it is natural to ally, but which are not a sufficient basis.
Especially since a part of the pharma world is already oriented towards a more continuous relationship and has included in its organizational structure a pole permanently dedicated to the relationship with patient associations, with investments and human resources operating in patient advocacy.
This is the most profitable approach for both actors: even for the industry, in fact, it is important to listen to the voice of patients, which is essential for bringing innovation to healthcare and to the aspects of access to care. The second aspect is connected to the need to create a more stable dialogue: now the associations are interested in starting medium-term programs.
Collaboration with industry must go beyond support, albeit commendable, to the isolated initiative, to build a real strategy in support of a certain category of patients.
To this end, it is necessary to work on various strategic fronts for a more articulated action, from starting investigations to better understand the experience of a certain pathology, to gathering clinicians and researchers on that pathology around a project, perhaps through courses and conferences. , to provide training courses for the associations themselves or for the health professions that revolve around those patients, to initiatives aimed at family members and caregivers, etc.
It is an approach that requires continuity but is essential to create a culture of pathology on the one hand and a terrain of relationships in which studies, information and services to patients grow with greater involvement of all stakeholders.
The associations are becoming a true interlocutor of health institutions, thanks to their disinterested nature. Independence makes these actors excellent interlocutors for companies.
Finally, again in relation to continuity, any funding to associations cannot be interrupted suddenly, without consultation: if, after so much effort to create a project, the company changes strategy and withdraws, the work done risks being wasted.
The relationship with patient advocacy associations cannot be put on the same level as business issues and be subject to fluctuation at every change in management: they are social issues, there are people, the sick, and companies must realize.
It is therefore crucial for the industry to invest in relations with patient associations. On what basis?
Starting by listening to their voice. This could be a third rule. Very often companies seek the collaboration of associations on their own already structured projects. But associations also need to be supported on their own initiatives, which arise from the needs of patients. Collaboration must be built on a more equal basis, an aspect that emerged strongly from my experience of listening to the associative world.
There is an enormous disproportion between the industry, which has the economic and personal means to achieve any goal it sets itself, and the associations, made mostly by volunteers, practically without economic resources and with all the physiological difficulties in defining a clear strategy. . But their input is valuable, which is why companies should act to mitigate this gap and increase this voice.
How is it possible, on both sides, to build a less unbalanced relationship between companies and associations?
On the part of associations and the world of institutions, it is first of all necessary to abandon certain false moralisms. Still too often, in relations with the outside world and with institutions, there is a kind of prejudice, if not stigma, towards financing from companies. In reality, the funding does not go to associations, but to their projects, which could not be started in the absence of these financial contributions. And there is nothing wrong with using these resources, as long as there is transparency.
This is the element on which to base the relationship, of which we see virtuous examples in other countries. It is the principle of disclosure. As a facilitator for the participatory process of associations in the Lazio Region, I have found that it is very useful to ask associations that intend to take action in the participatory process to produce a declaration of disclosure in which to explain who their governing bodies are made up of, whether by patients, by doctors or business people.
This has served a lot, not only for the institution to understand the nature of the interlocutors, but also for the associations themselves, to clarify within them. Being financed by companies is not – and must not be – a problem, but for it to become normality it must be declared with the utmost transparency.
And from the pharma world?
Companies need to understand their respective roles. Although this happens less than in the past, today there is still an overlap between activities: sometimes companies take action in a role that is more typical of an association, relegating the latter to a passive role.
If you undertake a campaign, for example, or a survey, or a training project, it is advisable to delegate an actor who has the skills to do so: universities, consultants, the same associations. Industry should not take the place of more neutral players. The corollary of this approach is being available to collaborate with other actors, including companies.
This is what happens in Altems Patient Advocacy Lab, in which we build projects with the support of various companies that also participate in initiatives that do not fall within their field of specialization. Collaboration between companies is a moment of growth for the world of industry and many companies are already asking not to be the only industrial players within a project. This is the best way to truly build participatory medicine.
Being active in an area that is not necessarily related to the group of pathologies that make up the specialization of a certain company is a great cultural growth. Working on services, as well as on drugs, is in fact the challenge of health systems, a frontier of assistance in which the pharma industry must play an active role, because today companies must move towards society. One aspect that the pandemic has highlighted is that companies can make a contribution not only to the growth of healthcare, but of the country.
In Italy, the pharmaceutical industry constitutes one of the most advanced productive forces, but it is still difficult for it to be considered as part of the health system. And to be recognized as such, it is necessary for these actors to participate that goes beyond the close pertinences of their business.
Can working alongside associations improve the reputation of companies among citizens?
A reputation problem exists, and has always been. But it is basically a cultural rather than a practical problem: citizens trust drugs and “branded” drugs, so much so that generics are struggling to establish themselves. They also trusted vaccines: the numbers speak for themselves, the vaccination campaign had a very high level of support.
But we have inherited a very strong corruption system, which has left a mark. I lived with Cittadinanzattiva the great processes of corrupt healthcare and I can say that, compared to 20-30 years ago, the perception of big pharma has greatly improved.
And in this vein it is important that the industry continues to work as a virtuous actor to support the health system, to make it clear that it has a focus on the general interest.
On this aspect, patient associations represent a rather mature partner, which has been able to free itself from certain prejudices and create a terrain in which to collaborate, demonstrating that, despite the current limitations and margins for improvement, it is possible to build participatory care networks and implement the patient’s involvement in the system that goes to treat him so that it is tailored to his needs.