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The patients involvement in health policies in Europe

Brussels, 16 may 2013

Alessio Terzi, Antonio Gaudioso Cittadinanzattiva - Active Citizenship Network

The relation between citizens and the healthcare systems

Intense: the stakes are, exactly, health and life; Differentiated: it is not limited solely to treatments but, more generally, deal with the rights of citizenship; Complex: as well as health services, it can take place at different levels and covers very different subjects but, really, little known In fact there is a significant gap between the reality of citizens involvement and the set of knowledge and concepts used to interpret it.

The report
1. An overall view
2. The civil dialogue in health policy 3. The HTA approach

4. Participation in member states

5. The planet of oncology 6. Conclusions and recommendations

The issue of the involvement: overall view

At least, four approaches: Consultation Empowerment Civic Activism Representation of patients experiences

Forms: permanent bodies, decision making techniques. deliberative democracy, non

Subjects. policies, guidelines, assessment of services for chronic diseases.

(a lot of) Critical areas, in particular: consultations turn into an exercise in public relations on the part of policy-makers and service providers and methods are too tied to the preferences of health professionals and administrators; there is a big gap of knowledge existing on the nature, the business and the reality of civic organizations; there is uncertainty on the identification criteria of the organizations to involve

Empowerment is a process of social action through which individuals, organisations and communities acquire jurisdiction over their own lives, in order to change their social and political environment with the goal to improve the fairness and quality of life. (Rappaport)

Organizational sharing the treatments decision-making process, sharing the services planning and evaluation (e.g. Civic Audit); sharing the services management. Community Voice your opinion, contributing to the local community management. Individual lifestyles, and make themselves responsible for their own chronic disease, access to the services organization, access to the decision-making process of treatment.

Civic activism/1
Most of the experiences would probably not take place without the autonomous mobilization of citizens toward institutions and professionals to develop new forms of dialogue The processes of citizens activation are very complex. Has been identified at least 12 recurring types of organizations. (Moro) For example: if one considers the members origin, the associations of patients with chronic diseases are the prevalent type in the health field. Also significant is the presence of voluntary organizations. Health policies are a privileged field of action for active citizenship movements. An important role is often played, by consumer and users organizations.

Civic activism/2
Civic organizations are involved at all levels of public life, giving an important contribution to the European Union's intervention in health policy.
The forms of intervention are likewise diverse: we can define them as real technologies - operational rules systems based on a specific set of knowledge gained through the practical experience of active citizenship, the research and deliberation upon it, and its transmission over time. (Moro)

There are five families of technologies: direct action, mobilization of resources, interlocution with institutions and stakeholders, Institutions enabling , management of services.

The representation of patients experiences

Patients experience is not only a psychological problem but also a valuable source of essential knowledge necessary for a good governance of healthcare systems, the development and implementation of treatments, and the scientific research (Akrich, Rabeharisoa).
The fields in which the collection and representation of patients experiences have taken a more relevant meaning are the development of patient cantered care, scientific research and Health technology assessment.

The representation of patients experience

Patients' associations are not only passive sources of knowledge but are also involved in the design and implementation of research and at all stages of the assessment process. It is interesting to point out, in this regard, that legitimacy does not come from the application of formal criteria of representativeness, but by the ability to practice a set of pertinent and relevant actions that go under the name of Evidence Based Activism (Akrich, Rabeharisoa).

The civil dialogue in health policy/1

There is a convergence among the different EU institutions when considering civil dialogue as an integral part of the process of ' consultation' in their system, as deemed necessary to meet the principles of good governance (Mascia). Even European health agencies systematically practiced civil dialogue and DG Sanco has developed, in this regard, a particular assets and a 'Code of Good Practice for Consultation of Stakeholders' .

The evaluation of the representatives requirements remains firmly in the hands of DG: this created an area of privileged interlocutors.

The civil dialogue in health policy/2

In fact these functions are carried out mainly by the socalled 'civil society in Brussels', made of officials and managers of 'umbrella organizations' with permanent headquarters in Brussels, and professionals working as experts in their field.
The EU Health Forum, originated in 2001 with the specific aim of bringing together umbrella organizations, in the health sector in order, to ensure that the European Commissions health policy is transparent and responsive to public concerns.

The Health Technology Assessment approach/1

HTA is not simply a set of disciplines and methods to assess technologies. It represents instead a real philosophy of management for a healthcare system that intends to tie the decisions systematically taken to the available scientific evidence or, otherwise, to 'transparent' mechanisms in which all stakeholders can participate by bringing their own perspective (Cicchetti Marchetti). Among stakeholders, of course, the citizens!

The Health Technology Assessment approach/2

The involvement of citizens, in their different roles, covers virtually all phases of the assessment process: by implementing mechanisms to report the relevant issues for the patient (identification of the technologies phase); providing the opportunity for the patient to help in the collection of evidence to inform decisions (assessment); creating forms of patient participation in the decisionmaking process itself (decision); involving patients in the circulation of the recommendations made on the basis of the assessment process (communication).

The Health Technology Assessment approach/3

There is still a considerable gap in the attention paid to the dialogue with citizens. As evidenced by a survey conducted by INAHTA in 2010. Two important limits can be seen in the actual approaches used by agencies 1 a lack of resources to fully engage the patients in decision-making 2- the fact they keep on being considered not as a partner in all respects, but mere final users (Messina, Granger). The best practices of England, Scotland and Australia demonstrate, however, that the involvement of patients may have a strategic value. (Petrangolini)

The Health Technology Assessment approach/4

The European network on Health Technology Assessment (EUnetHTA) was founded from DG Sanco to promote HTA. The patients involvement follows the rules of European Agency. Towards an equal dignity? three kinds of problem: barriers that make participation difficult (information, time and costs) transparency and accountability criteria for inclusion of civic organizations the role of citizens (partner not objects of observation).

Participation in member states

Its impossible to make a summary but we can make three simple observations: Almost all states offer some form of involvement and empowerment The actions are mainly limited to the "representative organizations" as is the case for the European institutions

The development of HTA is still limited

The planet of oncology/1

In this field, all forms of involvement take on a special intensity:
Consultation forms: the emerging feature is a rather widespread presence of representatives in comitology at all levels. Oncology is a privileged field of individual empowerment, as proved by and reflected in the large number and development of personalized treatments. Civic activism is broad, widespread and multifaceted. An analysis, albeit brief, of the sites of various national associations highlights a prevailing attention to the issues of education, information and advocacy.

The planet of oncology/2

Four areas of in-depth study have been identified: 1) the activity of European umbrella organizations: many organizations, both national and "umbrella", have an active and significant role in scientific research (ECPC, Europa donna, Myeloma Patient Europe, SPAEN) 2) the development of personalized treatments the personalized treatments, albeit with many difficulties, are becoming increasingly important (Europacolon) 3) the participation in scientific research it is reasonable to believe that this has a considerable

The planet of oncology/3

4) the services offered by associations, all integrated with a note on web 2.0 participation
Less than 20 % of patients get into contact with an association during their treatment. Most of them face cancer as an individual experience, or as an experience to share merely in nonassociative contexts, such as collaborative areas on the web. (Marsico).

The individual practice of active citizenship through the web opens unprecedent opportunities for intervention that can take on a particular significance in the reality of people affected by cancer;
In organized platforms, such as that of Cancer contribution, this people can generate contents and enrich each other by sharing

Patients organizations and empowerment services

Patients organizations are, in all respects, agents of policies aimed at public institutions, the world of research, industry and professionals. However, they also perform the other functions of active citizenship, in particular patient support services to empowerment: general information and medical research services, socializing and entertainment ones and advocacy and counseling support to people.

Conclusion: a major concern

The active citizenship is a constituent part of the European construction and is a strategic resource to combat crisis of the European social model, however, is scarcely considered and often even treated with suspicion by the public institutions. This paradox is particularly relevant in this time of crisis and can have bad consequence. They are essential serious policies based on knowledge less approximate those previously used.

Recognizing and promoting areas of active citizenship

1. 2. 3. 4. 5. The opening of arenas for debate and discussion; The management of innovation and technologies; The empowerment of individuals; The empowerment of local communities; The monitoring of national and European policies.

Opening arenas for debate and discussion

An effective circulation of knowledge and ideas is a prerequisite for designing efficient policies. Public institutions can not consider the involvement of such organizations as their own prerogative. A better selection of stakeholders based on shared criteria may improve the quality of the contribution. The space 2.0 offers important opportunities, especially if backed by intelligent directions, able to guide the debate and to draw significant conclusions and recommendations from it

Management of innovation and technologies

A substantial part of the sustainability of the systems is based on the ability to effectively managing the technologies. The representation of the experiences of patients is an essential component of scientific research and assessment processes. Civic participation must be extend the entire process: horizon scanning, priority setting, planning, implementation, assessment, appraisal, dissemination.

Empowerment of individuals
The empowerment of individuals takes place in at least two directions: the formation of a empowered user capable of facing reductions in protection caused by the crisis of the European social model; participation in the implementation of personalized treatments that are the result of a comparison between professionals, citizens and services designed to ensure the optimum use of their resources and to define the respective commitments.

Empowerment of local communities

Local communities are the place where services are actually delivered, and where civic participation can take on particularly intense forms. They are, therefore, a privileged forum for the politics of development of subsidiarity, capable of joining compatibility and universality Local communities agents of development - and not, as is the case in traditional approaches, mere catchment areas

Monitoring of national and European policies

The crisis calls on all institutions to ensure very high levels of accountability. A definition of shared criteria for assessing the performance and compliance of the services to citizens ' rights should be reached, and then periodic monitoring to follow the evolution of the situation and measure the actual impact of policies should be implemented.

Nothing about us without us! (ECPC)