Network support: HUmanizaSUS Network connecting possibilities in cyberspace.
We intend, with this text, to present the Rede HumanizaSUS (HumanizaSUS Network) as an innovative experience of support that has been produced in the universe of internet and its social networks. What we have called virtual SUS territories or, in a paronomasia, simply CiberespaSUS (1).
Network of networks, based on the "anarchist" cooperation of thousands of computer centers around the world, the Internet has now become the symbol of the great heterogeneous and border mean that we here refer to as cyberspace", (p.12) (2)
Before we get into the discussion about the support itself, it is necessary a quick contextualization on the issue in the contemporary, in which at least two movements need to be highlighted: the growing importance of the role of information technologies and immaterial labor in the field of human production; and the establishment of a new communicational ecology, increasingly consolidated in the contemporary world--communication in virtual networks or in cyberspace. The conjunction of these processes has led to significant changes in the working world as a whole, as well as in the relations between people.
For Levy (2), cyberspace can be considered a virtualization of reality, establishing a new relationship with the space-time from a wide range of possibilities of virtual interactions that often leave the same structures in the "non virtual" world, However, these structures don't have a complete correspondence with the "non virtual" world, since the virtual world will engender its own code and structures. These virtual spaces involve not only speaking and writing, but the virtualization of all modes of human communication, producing profound changes in our way of thinking, to make sense of the world, to make relations with each other and with knowledge. In this scenario, cognitive, linguistic and affective aspects become privileged as never before, producing new possibilities of subjectivity and socialization (3).
In the health field as well as in other fields of practices, the internet and its collaborative and social networks have been powerful devices to strengthen our power of collective action. Computing and communication resources invaded not only the "hard technologies" of health (4) but also its field of relationships and knowledge production: e-mails, electronic medical records, computerized job scheduling systems, monitoring and evaluation of health programs, teleconferences, distance learning and communities of practice, are some of the examples that the computerization, the internet and its possibilities are here to stay, especially with the arrival of new generations of professionals already familiar with life in cyberspace.
CyberspaSUS virtualizes the Brazil's Unified Helth System, the Sistema Unico de Saude (SUS), modifying it, enhancing it. This means that it is not simply a "double" virtual that matches or correlates with the "real" SUS, but the introduction of "reality supplements" to the SUS, which in our conviction, may bring enormous contributions to the qualification of their practices. Here, we will seek to examine specifically how collaborative and social networks in cyberspace, when virtualizing the management and health care support, empower this action, not only by the multiplier effect of these media, but by the changes that virtualization introduces in the ways of producing the support. When looking for these and other uses that have been made possible by computerized networks, we realize we still have not finished defining what building the health system, in fact, means.
To discuss the issue, we present the support experience lived in the HumanizaSUS network, showing how a collaborative and social network can work as a device for institutional or matrix support and, in particular, how this practice modifies itself and acquires other meanings in this new cognitive and communication "environment".
What is the HumanizaSUS Network?
We know that among the major challenges of the SUS, are those related to user dissatisfaction with the difficulties to access and to have their needs listened, which expresses the limits of the existing models, known as "inattention models" (5) characterized by endless lines, unwelcoming service, other forms of disrespect for the rights of health service users and fundamental human rights. It is in order to bring about changes in this "inattention model" that, since 2003, the Politica Nacional de Humanizacao (National Humanization Policy--PNH) and Attention and Management of the SUS (HumanizaSUS) supports cooperative actions, offering facilitation devices to activate the collective and collective action, necessary for the production of such changes (6). The convergence of this perspective with the potential offered by information and communications technology has produced the idea that the PNH should support the establishment of a collaborative and social network, open in the web for the humanization of attention and management in the SUS: the HumanizaSUS Network (http://redehumanizasus.net)(7).
Online since February 2008, HumanizaSUS Network (RHS) represents the bet of PNH in the constitution of a collective intelligence to supportthe humanization of the SUS and guarantees the rights of its members and workers. The creation of a collaborative virtual environment network makes room for people to communicate, to express the weaknesses and strengths of the SUS, and collectively build alternatives.
The RHS, a collaborative and social network of people interested and/or already engaged in processes of humanization of management and care in the SUS, aims to produce an agora, a public space that allows the meeting, exchange, mutual affectation, knowledge, host, the art of composition of a multiplicity of views.
Although the "intensive" character of this experience--the power produced in the exchanges that take place in this space--is its most striking feature, it also has an important "extensive" character, made possible by the revolution in contemporary forms of socialization that opened with the electronic networks.
Considering only the data access to the web platform (i.e without considering any communications made by the RHS across the multiple interconnected social media) in six and a half years of existence, there were about 2.5 million visits to their pages for nearly 2 million unique visitors who viewed over 5.5 million pages. Currently the network has nearly 30,000 registered users, of which 1500 has a blog on the RHS, which means that they have created at least one of the nearly 11,000 posts already published, which have received more than 28,000 comments (i).
The operation of this immense "expressive machine" depends on the articulation of a set of factors, among which we highlight: (1) the continued development of the platform according to the logic of collaborative design, (2) the setting up of a collective of editors/caretakers of the network and (3) the developing strategies together with other social networks.
The fundamental principle of the collaborative, affordable and self-moderate design
The RHS is a collaborative platform, developed with a content management system (CMS) of open source and free to use (Drupal). The technological development process is carried out from a participatory design methodology, where developers and users establish priorities and solutions jointly and interactively. This CMS was chosen exactly for having a high plasticity of uses, a great amount of available modules of high quality, supported by one of the major global free software development communities, allowing a quick response to the demands of the community.
With simple features, the platform has a clear flow of operation: any user who registers on the site can upload content (posts and comments), without a prior approval being required. Sent posts go to a voting queue, where they stay for a week or until they have 10 votes, when they are promoted to the main page. The voter user community is formed by those whose posts have been promoted to the front page.
Besides this main functionality, the platform also provides space for thematic communities (e.g Indigenous Health, ambience, among others), where users subgroups can establish more reserved exchanges, focused on specific topics. These and other features are defined along the user community through discussions moderated by a group of editors in a list of e-mails, launched in 2008 along with the web platform, relying initially on about 60 members: consultants and supporters of the PNH who constituted the "original" RHS community. Today, this list has over 500 members and is the collective that supports the collaborative development platform. In this sense, there is no dichotomy between the technological tool and its use, as end users participate all the time in its making.
For the effective development of a project to strength the SUS in virtual network, that has as one of the goals to include SUS managers, users and employees it is fundamental to think strategically about the architecture of this space. As the PNH teaches us in relation to the SUS physical spaces, there is a central concern with the "ambience" in this virtual space and its "accessibility".
The collaborative design was the way chosen to produce the ambience of this space; which means that, from the conception of the network, its features, its information flows, the technological tools we use and their operating modes, all those elements had to be thought along and as close to the people who would inhabit this space. This thinking along was built in order to avoid the typical split that exists in projects involving technology, where the technical team ends up operating as the technology development experts, and the participants, as users who need to be devised for the system to be designed by the experts, so to ensure usability features that meet their supposed expectations.
In fact, the network would be designed and used in the context of a Policy that had implicitness, a culture and a history, that could facilitate the ways to relate in a new space mediated by technology. Understanding these elements, the prior knowledge of technology of the initial group of participants and, above all, putting into discussion what features and what forms of interaction would make sense to them, was part of the initial network design process and ownership of its technology.
The RHS was built, therefore, with a minimum of technical resources, which should meet, above all, the need to establish a new type of public space for a humanization policy, that is, a space where policies would be that each individual or collective user could share practices, experiences, build his or her own narrative of what he or she lives and be able to speak and interact in the stories that affect him/her.
For this, we developed the structure of a blog, a tool used by a significant percentage of Brazilians; a blog that values the simplification of the tool, to make it as intuitive and accessible as possible, focusing on usability and the needs/opportunities identified by its users, according to the guidelines of collaborative design (8).
It is important to highlight that, although the RHS is constituted as a great blog of the SUS humanization movement, each new user who signs up and posts in the network has a personal blog, in which is described basic personal data, if the user wants to provide it, and a set of all publications of that user. This feature contributes to the collaborative dimension of the site and at the same time ensures that each user has his uniqueness and singularity preserved. Each of these blogs receives collective support, as they are welcomed and interact in the virtual agora. This is very different from creating a blog on a particular topic and feeding isolated content, as is the case in most of the blogs in virtual networks.
Another key feature created in this collaborative design stage was the possibility of the network participants to vote in posts of different users, and the most voted ones displayed on the main page of the site. The idea of this "moderation queue" was to create a collaborative relevance filter, i.e, a way for the network participants to say what in fact is relevant to them, which deserves to be promoted to a privileged space of visibility and thus, to give a symbolic endorsement of the contents considered fundamental.
So, these two key features, the collective blog and the moderation queue characterize succinctly the resources designed and constructed to set in motion the RHS. The simplicity and ease of use were concerns that have proved relevant in order to design the network and in the way these funds were appropriated by its participants.
The setting up of a collective of editors/network caretakers/mediators/network curators
It is important to mention that the computerized platform does not exhaust the description of the "technological solution" developed. It also includes the development of work processes, which perform editorial duties, network caretakers, mediators and curatorial, which are an indispensable part of the solution (and echo other specifications of the support tool in the virtual space). That means, it is not only a "technological" solution but a "socio-technical solution." We call socio-technical solution the inseparable double-composition that constitutes this type of device: the machine and human, the software and the work processes.
In this sense, every technological development of this network has always been thought, estimated, built and rebuilt from the prime trial of a sort of "vanguard" of RHS users, composed of health professionals and journalists, who would eventually form the group of editors/network caretakers.
The daily work of activating a social collaborative network in health brought to the virtual dimension aspects of the functioning of the "non-virtual" health networks, calling for arrangements and specific technological devices toward qualifying the power of exchanges, affective networks, the communication relevant to a particular audience, at the same time plural, but with the common brand to inhabit the SUS, and now also the CiberespaSUS. Thus, in this new environment, it has operated the intensive work of some members of RHS who took upon themselves the care and strengthening of the network.
At first, this was a volunteer group consisting of SUS workers who exercised an active care role with the network, called at first, as a group of editors, for offering mainly support in the use of blog editing tools and host users. Later on, renamed as a group of editors/network caretakers for exercising the guidance of host in cyberspace and for taking care of the network's daily activities in all its aspects. With the growth of the network, this collective has been collecting new functions and expanding its spectrum of action, becoming, in what we today call a collective of editors/network caretakers/mediators/curators of RHS, whose name indicates, strictly speaking, the specific differentiation suffered by the support tool in virtual environments.
With the growth of the network, this collective turned professional and was officially incorporated as an essential element in making from the RHS what it is today. The group that currently (2014) ensures the functioning of the whole of this socio-technical agency, consists of a multidisciplinary team, composed of 03 psychologists, 01 nutritionist, 01 occupational therapist, 01 nurse and 01 social worker, 01 biologist, 01 computer scientist and 01 journalist, as well as 01 public health physician and a group of professionals who are the developers and programmers of the RHS computerized platform.
We identify in the arrangements and work processes of this collective a unique way of thinking and making the support network (that, however, is not an exclusive practice of this group, which may be exercised by any participant of this open collaborative network, as it will be highlighted below), that we will describe later, and that even so, represents only a "first layer" in our approach to this issue.
Communication and partnership with other social networks
With the growth and the intensive use of social media by men and women all over the planet, it was necessary the "coupling" of RHS with the far reaching social networks, such as Facebook and Twitter. Creating a profile on microblogging (RedeHumanizaSUS) and a fanpage on the "blue network" (https://www.facebook.com/RedeHumanizasus) we rather amplified the visibility of productions made in the RHS platform, also accelerating the number of new users and "likers". We identify here an important function of expansion and diversification of the network viewers and participant's profiles, which although used to be a more restricted audience composed of workers and SUS managers, it has now become a more heterogeneous audience, accessed also by the "friend networks" and "friends of friends" of our regular users. This movement creates, even though it was not its first goal, an "alternative" media to "talk about the SUS", with very different contents than what we customarily seen and heard in the commercial media. We began to give greater visibility to a "SUS that works" or at least to a SUS that, in its successes and shortcomings, is shown and thought publicly. And, what is even more important, it multiplies the possibilities of network support agencies.
Another important initiative is the creation of partnerships with other collaborative experiences related to SUS, which have been developed more recently. For example, the Community of Practices of the Department of Primary Care of the Ministry of Health (http://atencaobasica.org.br/). As well as the RHS, it is all about a user experience of virtual networks as a tool for the enhancement of management and health care processes, valuing the collective production of these processes.
These RHS integrations/partnerships with other social networks throw a "second layer" into sharp relief in our approach to networking support, which goes beyond the support exercised by a specific group of editors and facilitators of a platform, which is that support, even more boundlessly powerful, that occurs in a generalized way in open networks, where some require support as needed and others offer support according to their abilities and skills.
Support as a device in the RHS
For authors like Campos (11) and Oliveira (12), support falls between the strategies for the implementation of new arrangements, which produce another culture and other lines of subjectivity, than those focused mainly on corporatism and the alienation of the worker from the result of his work, leading to the invention of a different organizational culture that encourages the commitment of the teams with the health production, allowing them at the same time, their own personal and professional fulfillment.
These references will certainly help us to think about the support practices that happen in RHS and that align with the current production of support in the SUS. However, we will also highlight the inventive ways to perform networking support, a radically transversal support that produces unprecedented actions in the health institutional support practices in Brazil, focusing on the creation of intelligent collectives.
The concept of collective intelligence was proposed by Levy (2) from the intersection of different fields of knowledge, such as Biology (12), the Cognitive Sciences (13 14), Human and Social Sciences (15, 16, 17, 18), and mainly Phylosophy (19, 20, 21, and 22). This new disciplinary field focuses on the study of the power of collective action of social groups, with the premise that this power depends crucially on the ability of individuals and groups to interact, putting in relation to produce, exchange and use knowledge (23).
It starts with the premise that intelligence is always the fact of a collective: collective ideas, thoughts, cognitive modules, neurons, cells, organisms, people, species etc. According to Levy (24), our cultural prejudices incline us to imagine that intelligence would be the property of individuals; therefore, he adds the adjective "collective", even if it is, strictly speaking, a redundancy.
In cognitive terms, the collective intelligence translates into an autonomous learning ability, and historically, into a process of evolution that is like a power of self-creation, aspects that are also expressed in the micro-politics of the work processes in the health network. However, this character is not given a priori; it is placed as a possibility and depends on the individuals who operate the network and its singularities.
For Costa (25), collective intelligence operates actively in the dimension of the micro-politics of health work, as it leverages a perception that emerges in each individual when they realize that, in their work actions, there is interdependence with the actions of other individuals. To encourage and enable this self-creating character as well as to strengthen this network of relationships is one of the multiple potential offers from RHS to the SUS users, managers and workers.
But how does this question of collective intelligence relates to health support?
According to Barros et al (26), institutional support is an intervention device that proposes a way to make the necessary changes to the SUS stands as an effective public policy, expanding the capacity of analysis and democratic management of the units and health teams (with all of the different meanings in terms of the increased power of collective action of those who do the SUS). Consistent with this definition, the RHS has operated as an important tool in promoting public political exercise in the SUS, in an open and transparent network, from the production of encounters and exchanges in an inclusive territory, breaking geographical barriers and giving way to support with many accents, from different cultural and subjective landscapes (27).
All network contents are public and are available to any web user. On the other hand, any citizen registered on the network can post content, fueling a collectively constructed and continually expanded collection. This movement, besides expanding the analysis capabilities of the individuals who access the posts, also expands the users' ability to publicly take a position on building an analysis, generating confrontation and compositions with other possible analyses that democratically inhabit this virtual territory.
To think of the support in this virtual territory, it seems particularly useful to think of the support less as a method or tool, and more like a "function" (in particular, for its potential to "molecularize" the notion of support, escaping from a more "molar" record, as a method or tool):
The support, taken as a function implies a clinical-critical-political task, enrolled in concrete arrangements that put in relation subjects with different desires and interests, with the mission to enable more collective investment objects and to support those subjects to expand their capacity of problematization, problems invention, interference with other subjects and transformation of the world as well as of themselves (p.13) (28).
A perfect definition of the support we see happens in the RHS! Support which doubles ("molecularizes"), in fact, in a plurality of "support functions". In this sense, let us turn to the different ways that this "support function" has been going on RHS, and in its connections.
Support Functions in RHS: apoio.com
The first support function identified is to support the use of the platform tools. This support includes the actions of editors that make users able to expand their traffic capacity and autonomous use of the communication facilities available on the network (editing, publishing, including images, videos, etc.). On the one hand, it is some kind of "matrix support" in the use of digital tools, on the other, an effective action of digital inclusion.
A second support function identified is the emotional support. This support is immediately recognized in welcoming new members or new publications, carried out especially by the editors/networkcaretakers, but also by other network participants. Here, we are faced with a support function that is markedly exerted by the editors/network caretakers, but not limited to this role: we identify this function fairly distributed among the most active participants of the RHS, constituting a sort of community ethos, this daily practice of welcoming new users, new posts, new proposals, and new ideas.
The third function that we can list is the support in mediating meetings where editors/network caretakers/mediators undertake the mediation function between multiple users, putting in connection different posts of similar experiences, triggering strategic commentators, producing relationships and knowledge and affections networks that can be leveraged from interventions within a post.
There is also a fourth function, exercised, privileged, by the collective of editors/network caretakers/mediators/network curators, which is the support as curatorship. The curatorship can mean to promote the expansion of the expressive power of a particular post, or it could mean acting in the production of relevance to certain content. This may occur in the choice of posts which are daily highlighted at the top of the main page or those that are shared on the RHS Twitter or Facebook fanpage. In this case, we refer to the curatorial function performed by the RHS editors/network caretakers/mediators/curators. But we know that all participate in a kind of collective curatorship of the RHS content, when they share their posts on their social networks.
For editors/network caretakers/facilitators/curators, it is clear that the mediating functions and curatorship are not "neutral" and have a political intentionality that needs commitment to the humanization of the public health system and with a certain ethics of health production as a right and of the SUS as a public good.
It should also be highlighted another very crucial meaning of curation as a form of support: the expansion of the expressive power of a content through interventions by the editors/network caretakers/facilitators/curators (but potentially for any users), requesting aspects to be clarified or encouraging the author to provide more information, post videos or pictures, giving more life to the stories. Again, an intervention with a clear political intention, since interceding on behalf of expressive forces of a story is always interceding for life.
That is, the curatorial dimension includes mainly the role of caring and jointly qualifying the narrative of the experiences arriving at the RHS through the publication of a post. We understood that this process may result in a transformation not only of the post narrative, but the subjects directly involved in this process: authors, editors-curators and readers.
We envision the establishment of a process in which when faced with the narrative of the other's experience, the curators could discover their intervention powers; and when questioned about their posts, the authors could reframe the narrative, as well as revisiting their places through the given experience; and when in contact with this exchange, the readers could learn and contribute from their unique reading of each narrative.
Editors/network caretakers/facilitators/curators still perform another support function, responding to the different demands arriving at "contact form" used by the users who wish to establish "non-public" communication with the website owners or the SUS. There are demands of every kind (since requests for access to services, to requests for support to the units or PNH booklets requests etc.), placed through a direct dialogue channel with citizens with various inserts in the SUS, a dialogue also always mediated by the welcoming, clarifications we consider, guidance, referrals and, whenever possible, seeking to trigger networks and enable new collectives.
Mapped the main support functions, it is important to say that these functions unfold in others, in other modes of expression of the network care and management, which are closely related to the subject that concerns us, namely, the humanization of health. The networking support exercise produces a constant "be based on", a space of resistance, a dimension of "caring of oneself" (29) exercised when an editor supports the other, when a user sympathizes with the story of another, when a social mobilization occurs around a story.
It constitutes in this exercise a process of dissolution of the supporter figure and of the supported part since each and every user on the network and their editors can support or be supported in different situations, an experience can support other experiments without their authors have never come into contact with each other.
Accordingly, the social network support deterritorializes the locations previously assigned to the supporters or the supported part, and radicalizes the horizontality of a device as the RHS in a way that anyone can have his function changed, often without knowing well about the support as a concept. It is about a support that is seen less for the objective and more for the effect, an assemblage of knowledge connections and knowledge networks that seek the expansion of transversal coefficients (30).
Of course, such support cannot replace or be compared to the matrix and institutional support actions developed in the offline context, or rather on the micro-politics of presential meetings that take place in SUS services and collective.
The mutual comparison of these two types of support runs away the scope of this article, but we know the power of arrangements and devices experienced by the PNH in the intensive support actions in the SUS territories. Here, we are interested in presenting and discussing the new powers that open in the modalities of support exercised in the CiberspaSUS territories and to what extent they can compose and add with the "non virtual" strategies of support production.
We intend, in this text, to establish some systematic relationship between the support function and the work done in HumanizaSUS Network. For this, we started from a brief outline of the conceptual framework that guides us, though charting the different forms of support that have been expressed on the Network in its more than six years of existence.
Importantly, we are aware of the limitations and difficulties of this experience, which are not explained in the text, although we would like to point them out, briefly, at this moment of conclusion. Among the limits to the exercise of support in virtual networks, we point out the challenges for the RHS itself to expand its power: (a) The limited access to the internet and to the information technologies still exist for many users, workers and managers of the SUS and (b) the barrier to participation that may represent, for some, the exercise of exposure and position in a public space, accessible to all.
But this exposition is also the great power of the network, as we try to demonstrate: the RHS stands as a space that disseminates, socializes and calls into public debate themes regarding the overall health and humanization, giving visibility to experiences from all over the country, into and out of the state machine. These narratives enter into dialogue with each other, producing affective networks, discussion and exchange of knowledge and support.
In the experimentations of networked support, we try to emphasize a display of inputs and outputs already experimented in a universe of possibilities which we still have no reach to its endless powers.
From that circumscribed and audacious list of experiences, it is possible to draw a decisive modulation in the support function that we could formulate as a passage from the networked support to the network as support.
With the growth of the network, it was produced a kind of "impersonality" of support, emerging as a very potent care device, because it can be exercised by all with each other, in an increasingly present horizontality. In this territory, the passage from the role of supporter to the supported, and vice versa, can happen in just one click.
Thus, the various dimensions of support in the RHS can sometimes be reflected: into an ethereal dimension, into a required invisibility on several occasions; into an activating dimension that includes the movement of hosting users, qualifying the discussions, moderating, responses to the contact forms etc.; into a content provider dimension, as for any other user; into an operational dimension, which includes lifelong learning, collaboratively, of the use of tools and features developed for the platform; Finally, into a common production dimension, of a collective that happens around the SUS positivity, into a context where it is implied that the network support confirms our interdependence with each other and revives the sense of support as "to count on", furthermore, enhanced into the "apoio.com".
Forged in the interfaces between the constitution of collective intelligence processes and the production of public policies in health, the experience of RHS reveals a possible drift of the support function in the network activation processes, of the power increased of collective action, or even, of the establishment of a crowd, according to the concept of Hardt & Negri (31) which highlights the political scope of that function: it is fundamentally about the existence of so many while many! And that can be derived from the action of many while many: a multitude of singularities producing a common, immediately visible: this common expressed in the "cultural production" of all the singularities that make the RHS community, while making the RHS the expressive machine of a possible "HumanizaSUS crowd."
The authors worked together in all the stages of the production of the manuscript.
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Translated by Lewis Lopez Valest
Ricardo Rodrigues Teixeira (a)
Sabrina Ferigato (b)
Dalton Martins Lopes (c)
Daniela de Carvalho Matielo (d)
Maria Luiza Sardenberg (e)
Patricia Silva (f)
Luciane Regio Martins (g)
Rejane Guedes Pedroza (h)
(a) Departamento de Medicina Preventiva, Faculdade de Medicina, Universidade de Sao Paulo. Av. Dr. Arnaldo, 455, 2 andar. Sao Paulo, SP, Brasil 01246-903. firstname.lastname@example.org
(b) Departamento de Terapia Ocupacional, Universidade Federal de Sao Carlos. Sao Carlos, SP, Brasil. sabrinaferigato@ gmail.com
(c) Departamento de Gestao da Informacao, Faculdade de Informacao e Comunicacao, Universidade Federal de Goias. Goiania, GO, Brasil. email@example.com
(d, e, f, g) Rede Humaniza SUS, Politica Nacional de Humanizacao, Ministerio da Saude. Brasilia, DF, Brasil. dacamat@ gmail.com; iza.sardenberg@ gmail.com; patrinutri@ gmail.com; luhumaniza2009@ gmail.com
(h) Programa de PosGraduacao em Ciencias Sociais, Universidade Federal do Rio Grande do Norte. Natal, RN, Brasil. firstname.lastname@example.org
(i) This last data is updated in real time in this link, the RHS webpage:http://www.redehumanizasus.net/1580- indicadores-darede-humaniza-sus) (7).