Participation in Health and Popular Power: form the power over others to the power with us in health

06/02/2019

Ending the year 2018, the ISAGS study “Mechanisms of Social Participation in Health in South America” ​​was published (http://isags-unasur.org/wp-content/uploads/2018/12/mechanisms-of-social-participation-in-health-in-south-america-30.pdf) that (under the coordination of Francisco Armada and Caroline Ignacio with contributions from Isabel Iturria) summarizes the institutional mechanisms, foreseen in the legislation or present in the web pages of the Ministries of Health and in scientific publications in each of the 12 South American countries for social participation in health, and proposes to group them into 4 categories: councils,  mediations, information dissemination and feedback. In Dialogues of the South of January 31, the study was presented, giving the opportunity to generate a space for conversation on the subject, with participation of the attendees (full video of the presentation available through this link), we present below part of this meeting of knowledge:

 

With regard to health as a right and its link with participation mechanisms, we recall with 40 years of Alma Ata, participation in health as a right and as a duty: “the people have the right and duty to participate individually and collectively in the planning and application of their health care “(PAHO Declaration of Alma-Ata, International Conference on Primary Health Care, Alma-Ata, USSR, September 6-12, 1978. Numeral IV), right and duty also present in many of the constitutions of the South American countries.

As an introduction to the discussion, we summarize (in its 50 years) the article published by Arnstein with the ladder of social participation (Arnstein, SR, A Ladder of Citizen Participation, Journal of the American Institute of Planners, 1969; 35 ( 4): 216-224), which has at its base modes of non-participation disguised as such, in the middle of symbolic participation modes and in the highest degree of citizen power. So, Arnstein places:

 

– in the two basal steps: manipulation (in which it is intended to “educate” the citizen, or allow him only to speak when it is to endorse what he is asked to endorse) and therapy (in which he wants to “cure” him) forms of non-participation;

-then the informing (you can hear what I say, what is already decided), the consultation (you can talk, but what you say does not necessarily change the decision) and the placation (maybe I will accept something of what you say) as the Intermediate steps of the staircase or forms of tokenism (symbolic participation)

-and at the top of the ladder as degrees of citizen power: partnership, delegated power and citizen control

 

The 4 categories evidenced in the study of the institutionalized “Mechanisms of Social Participation in Health in South America” ​​seem to correspond only to the intermediate steps of symbolic participation, without going beyond mechanisms of information, consultation and placation in the best of cases, even when participation is central to the conception of health as a right, and in the policy of Primary Health Care. The “participation” in these circumstances runs the risk of falling into utilitarianism, and even serve commercial interests and capital linked to the health sector, far removed from the true aspirations and needs of the peoples. The word token that Arnstein uses in english is also used to designate the coin substitute which some machines can be operated (instead of coins), but in truth, they are not interchangeable money with which the user can buy what he wants, but they can only be used in certain machines and for specific purposes. Thus participation in health can also be mediated, when the presence of citizens is used to endorse decisions, plans, investments that are not the product of the prioritization of the people and in which not even a resounding no in the consultation is binding to change the decision.

True popular power (as individual and collective participation in health) implies decision-making power, from the prioritization, planning, execution, management and control of processes, and we rarely see it despite the advances we have made. Not even the mechanisms (such as some councils) in which the number of people that make up the State and the peoples are equal (or even greater than that of State representatives) guarantee true popular power, which requires elements of training and organization that go far beyond the numerical parity (or superiority) for the decisions, to generate that the exercise of that participation has real impact in the final decision, in the redistribution of power, without being permeated by interests foreign to those of the collectivities themselves.

 

Other problems, such as those related to communication and judicialization, also emerge when talking about popular participation in health.

Claudius Ceccon presented us as the creation of the CECIP sought to contribute to the formation of people for their participation in political processes, working on community television that produced programs that at night were seen in squares, showing the power of the image and making critical analysis of communication with practice. The issue of teen pregnancy is treated by themselves generating products such as those that can be seen at: https://www.youtube.com/user/GravidezCaiNaReal?feature=watch

He also reminds us how with the new modes of dissemination through social networks, new possibilities of manipulation (before which it is necessary to respond) and use of data even with relevant impacts in recent electoral processes (as was the case of Cambridge Analytica).

After learning about the 89.3 FM experience, the community radio station of the Latin American Children’s Cardiology Hospital in Venezuela also shows products (see in the recording at 1 hour 23 minutes of the Diálogos del Sur video on January 31, 2019, on ISAGS‘ Facebook) in this case of radio micros on cardiovascular health carried out by girls and boys with cardiac surgery, as part of the vacation plan at the Hospital, comments Sebastián Tobar – Master in Public Health, CRIS-Fiocruz.

About community broadcasters there are very interesting regional experiences: TV Pinel in Brazil (with users of mental health services) and Radio Colifata (from Borda Hospital in Buenos Aires, Argentina), in which participation plays a role in health promotion and even healer for the patients themselves. Sometimes behind the patient groups some private industries take advantage to try to maximize their benefits by incorporating more expensive last generation drugs, and not in search of the common welfare. The case of HIV / AIDS has made it possible to promote universal access from social organizations, and at the same time there have been cases of pharmaceutical companies that pay lawyers to patient NGOs as a mechanism to request protection as a mechanism to create markets.

The problem of the judicialization of health (which is also the subject of a study by ISAGS) leads us to see how through the judicial power and the enforceability of a right (constitutional or established in some law) by the population, that could be an additional mechanism of participation and control of the State by the citizens, end up benefiting commercial interests.

This is the case of individuals or groups of patients who, manipulated by industry, become pressure groups ending in judicial sentences ordering the acquisition by the State (outside the protocols of the Ministries of Health) of more expensive drugs and not necessarily more safe, effective and relevant.

The road has been long, but there is much that remains to be done in the path of popular health power.

 

 

 

 

 

 

Isabel Iturria Caamaño

ISAGS specialist in Social Determination of Health

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