In the end, everything requires trust

Joan Escarrabill

Book stores are still important. Despite social networks and the avalanche of information, good libraries are still a source of surprises. If a book store doesn't surprise - if you only find common or the latest ones - you won’t return. 

When visiting the Central del Raval in Barcelona, I have never left without having found surprises. The latest is Comprender la Democracia (Understanding Democracy), by Daniel Innerarity. Eighty dense pages, with meaning and suggestive ideas. It is essential to read books from different disciplines to be able to establish parallels and systematically avoid shared and inbred ideas. Therefore, when we talk about patient participation, it is very useful to do so from a conceptual framework away from clinical practice. Now more than ever it is convenient to reflect on participation based on a conceptual framework described by people who think about democracy. 

Innerarity explains very well that civil society intervention is essential to guarantee democratic quality. However, this active intervention has to face a growing complexity with a huge number of very different actors. Therefore, with increasing frequency, the reality is difficult to understand (unintelligibility) and it is difficult to have reliable references in all fields (unattainable). The most important cause of this situation may be the lack of information, but, in many cases, the problem is information overload. Delegation of experts or consolidation of mediators (church, unions, parties...) has been strategies to minimize complexity in politics. But now it is seen that experts and classical mediators are not enough to simplify complexity.

When we are interested in the participation of patients (and of caregivers or the general public) we can succumb to unintelligibility (we are unable to explain adequately what the problem is or we can explain problems that do not interest patients), to the unenforceability (We want to explain everything and maybe we don't explain the essentials) and, deep down, we believe that we (the healthcare professionals) are the experts and who have all the solutions to all the problems (a kind of technical aristocracy). 

Patient participation can be considered in four broad areas: 

• Personal: affects individual decisions where the approach is made from the "shared decisions". The Catalan Agency for Health Quality and Evaluation (AQuAS) has developed a good conceptual framework with practical tools on shared decisions. 
• Service: healthcare providers must promote patient participation, through the identification of unmet needs, to improve the quality of care. 
• Policies: citizen participation is essential in the design of health policies. You can consult the document Marc de la Participació Ciutadana en Salut (Citizen participation in health) of the Catalan Department of Health. 
• Research: the dimension of research is present in the three previous areas, in which citizen participation is increasingly relevant and essential. 

The Hospital Clínic, in the 2016-2020 Strategic Plan, is especially interested in developing the participation of patients (and caregivers) in everything that refers to the improvement of services through a transversal project called "Structuring of the patient participation". Following Innerarity, these may be some ideas to promote patient participation in the improvement of services:

• The acquisition of skills to participate in the improvement of health services is not just a problem of training individuals. Participation cannot be based on the promotion of “expert participant” patients. We must promote collective intelligence and co-creation in the design of services.
• The objective cannot be to obtain the expertise of patients and caregivers who participate in service improvements. The people who participate must have an overview and, above all, know the logic of the functioning of the health system (Innenarity says that citizens have to know more "the logic of politics" than to know in-depth all the issues discussed).
• Interactions must be promoted to “collectively combat uncertainty” (Innerarity says so, referring to democracy and politics).
• In the search for solutions to complex problems, the role of the expert is always relative. Whenever there are asymmetries of knowledge, the most important element is trust. Quim Brugué et al. They explain very well that trust helps to reduce social complexity if certain rules such as the diversity of actors (plurality and inclusion), clear rules of operation (respect, expectations, and working methods) are met and clarifies who makes the final decision (authority) and how the account performance will take place.
• Most of the time it will be very difficult to find the "best" solution and, perhaps, we will have to stop when we find the "most satisfactory" solution. In terms of health services, solutions are always provisional depending on context, resources and knowledge.
• Observation, control and accountability requirements are key elements of participation.

In short, the participation of patients (and caregivers or citizens) in the improvement of health services is based on cooperation (co-creation) and health organizations must create a framework that facilitates this progressive accumulation of collective intelligence.

Choral singing is a good example of this idea, of the importance of collective action, and precisely because of this, "Va Pensiero", from the opera Nabucco by Giuseppe Verdi (1813-1901), fits perfectly.

P.S. We do not always find the good perfume in the small jar. In science, as in many other dimensions of life, good perfume requires critical thinking, debate, tolerance, respect for dissent and positive criticism. This is very well explained by John Ioannidis in a recent article.