Translated by Connie Chow-Petit from an interview in May 2021.
Published on 21 July 2021 originally here :
For many years, Connie and Benjamin Chow-Petit have been actively involved in the transformations of society triggered by makers, hackers and third-party movements, particularly in the legal, economic, informational and technical fields, and around the issues of governance, citizenship and benevolence. They are co-creators of the OpenARA network, the Oxamyne cooperative, and leaders of the littleBits Lyon chapter.
Connie and Benjamin Chow-Petit are also behind an action research on community health within the citizen laboratory La Myne, which they describe in this interview recorded in May 2021.
COMMUNITY HEALTH APPROACHES
What is your view on the issue of health today? What engages you in working on these issues?
Connie Chow-Petit : For the past six years, I have been a contributor to a citizen’s laboratory, a free and open source third place called La Myne, in Villeurbanne.
With Benjamin Chow-Petit, I work on several different subjects, including health. It is an issue that is very close to my heart, in a very personal way and because of my history with my family, and it is important to me to take into account on a daily basis, in all its dimensions and with my community.
Benjamin Chow-Petit : The first time I asked myself questions about health was when I was 12 or 13 years old, when I was reading Isaac Asimov. My father was a chemist, and I saw parallels between the way the robot R. Daneel Olivaw (1) communicated his ideas to the galactic civilisation and chemistry. Indeed, at the same time my father was talking to me about autocatalytic reactions and things like that. I was disturbed by the similarity with which certain phenomena were described.
So I became interested in the sciences of complexity (2), which concern matter, energy, information, life, civilisations, physics and art. With this approach, we try to understand what makes things alive, how they can develop, diversify and connect over time.
It is from the sciences of complexity that I became interested in health, according to an approach that does not limit the definition of health to the absence of disease, but which apprehends it through a thought of interconnections.
COMMUNITY HEALTH AND COVID19
Today, you deal with health issues in a collective and community context, and in particular within the third place La Myne, where social issues, solidarity, etc. are at stake. Can you tell us about your experience?
Connie Chow-Petit : We can start by talking about the process we called Epidemyne, carried out in March 2020 during the COVID19 health crisis. In particular, we produced a hydroalcoholic gel based on the WHO recipe.
Benjamin Chow-Petit :
In the spring of 2020, society faced a series of shocks: the epidemic, confinement, etc. Among the members of the association, we got together to organise ourselves as a collective in the face of these shocks.
Our discussions quickly turned to issues related to the social context and we tried to understand, simply, what was going on. What emerged from these discussions was a form of organisational chaos. Some people were better informed than others. So a scientific watch was set up.
We also saw very concrete needs emerge among our contacts. The community therefore set out to respond to these needs, which were sourced.
This led to the production of hydroalcoholic gel, because there was a shortage. One thing leading to another, we were in contact with manufacturers, then other groups in the area, local authorities and social services that needed gel.
We also noted the need for digital support for certain ecosystems, particularly with regard to the logistical organisation of supplying masks.
Thus, during this period, a series of actions were spontaneously triggered by the community. These actions were documented, so that any organisation or structure could take them up and replicate them. We also did a lot of transferring of our methods and skills.
Benjamin Chow-Petit : Sometimes journalists ask us at Myne, as a community, to specify who we are and what we do. Sometimes they hear about startups, sometimes about SSE, degrowth or art. From our point of view, it doesn’t matter. It’s all these interactions and entanglements that matter to us.
All these terms, designations and fields of research have emerged from a humanity that seeks to understand itself and the world. To deal with this immense complexity, humanity creates categories to describe the phenomena that run through it, but these categories are not reality itself. These categories are a means of appropriating reality, of communicating.
In the same way, when we talk about health, as a living being, a biological being, a social being and an economic being, we apprehend multiple dimensions of this term. We are the emergence of all these dimensions that constitute us. The architecture of the places we live in, the biological diversity of what we eat, our family and political relationships, all have an impact on who we are, on our health and our ability to adapt.
If we want to deal with health in a holistic way, taking into account well-being, the relationship of individuals to their environment, individually and collectively, then we need to understand health as the interrelationship between all these factors.
In theory, there is a relative consensus on this conception of health as a global phenomenon. In this sense, the WHO definition takes into account social, economic and other criteria. But in practice and in terms of culture, this is still far from being the case, in the sense that the areas of intervention are still very much sectorised.
But by having a more complex and integrative approach to a range of data sources and means of action, we can understand health issues with greater relevance. It may seem more complex on the surface, but in practice it allows us to focus our efforts where it makes sense, at little emotional cost and within a controlled time frame.
Connie Chow-Petit : For example, in our community we found that many people were in a precarious situation and needed economic stability. For us, the main challenge of the health authority is to include and take into account all these socio-economic aspects in our actions.
HEALTH DATA GOVERNANCE
What do you call a “health data governance”?
Benjamin Chow-Petit : In the third place, and in particular within our community, La Myne, we carry out our actions according to open and contributory modalities, notably with free licenses. Because of the plurality of contributors, several terminologies can be used to designate and describe the actions we carry out or the objects we work on, depending on the approaches of each one.
The same is true when we work on health issues. Not all contributors use the same terms to describe the actions that are implemented at the Myne: some will speak of “community health management”, others of “health cooperatives”, etc. However, the approach is the same for all.
However, the approach is the same: if we want to understand what is at stake in the field of health from a biological, economic, societal and environmental point of view, we think it is relevant to mobilise, among the available tools, data and their interpretation.
Understanding health issues by working with data allows a certain capacity for action. There are also issues of governance, production and co-production of these data and analysis of environmental and societal issues, etc.
We had to identify and name an object, a space dedicated to this approach. This is why we have dedicated the idea of “data governance” or “data cooperative”. The idea is to cross-reference the issues, to allow people and organisations to test the relevance of a data-based approach to health, and to share tools and experiences.
ROLE AND USES OF A HEALTH DATA GOVERNANCE
Today, the health data governance approach is a driving force for your action, leading you to engage in a certain number of discussions and partnerships with a variety of actors. You trigger mechanisms of inter-knowledge, and even solidarity, with them. Can you describe your relations with this network of actors and their objectives in the context of data governance, as you prototype it?
Benjamin Chow-Petit : The objective of the data governance system is, above all, to be useful to what already exists. At all levels, from individuals to the public sector and private organisations, there are already a large number of initiatives that deal with health data issues.
We sometimes initiate our approaches from personal uses and prototypes at the individual level, as well as sometimes from the work of large organisations such as the Auvergne-Rhône-Alpes Regional Health Observatory. We are also in contact with companies such as Cozy Cloud (1), which deals with the hosting of personal data, or MIDATA (2), a Swiss health data cooperative. We are also active around issues concerning the European Data Governance Act, which is currently being drafted.
We are activating this network by implementing what are called reciprocity agreements. We propose to contribute to some of the work that concerns the players in our network, and in return, we ask for commitments within the data governance system, which can be embodied by the provision of tools, for example. In this way, we build a data governance through practice.
These reciprocities concern all levels of the ecosystem, both individual and collective. For example, Connie Chow-Petit and I have started to use biometric data capture and analysis tools as individuals. We are analysing our biological functioning over small periods of time using specific tools, and we are learning to understand their possible uses and effects.
THE CHALLENGE OF PERSONAL HEALTH DATA
Working with health data means taking an interest in ethical issues, particularly concerning the protection of privacy. This debate has gained momentum since the beginning of the COVID19 health crisis, during which applications such as StopCovid were strongly criticised from the point of view of the society it prefigures and the risks of surveillance, control and discrimination that it makes possible. How do you position health data governance in relation to these issues?
Benjamin Chow-Petit : At this point, we have a better grasp of the systemic dimension of health issues.
I have already worked on pathologies such as Parkinson’s, Alzheimer’s and cancer, which are systemic diseases, meaning that there are multiple and massive data needs to advance scientific knowledge on these subjects. We are then faced with paradoxes that are specific to complex systems, namely that something that treats a given criterion particularly well will generate problems from the point of view of other criteria.
If you don’t approach certain problems from a systemic point of view, but deal with them one by one, the risk is that you will be faced with a totally unmanageable complexity. For example, from a purely scientific point of view, the fact of having massive data on the biology, ecology, behaviour of people and their location is very interesting for understanding systemic diseases such as cancer. This allows us to have total traceability. The more data we have, the more we will be able to find correlations, possibilities for experimentation and discovery. This will make personalisation possible.
However, the generation of this data has an ecological cost, a social cost and also brings several risks, including that of concentrating power. The mobilisation of data is also, in certain cases, an undesirable practice, as not everything is quantifiable when it comes to describing relationships. Finally, certain behaviours towards data or digital systems can themselves generate health problems, literally. For example, orthorexia, a set of dietary practices, characterised by the obsessive desire to ingest healthy food and the systematic rejection of food perceived as unhealthy. Or digital addictions.
These risks exist within any complex system. That is why we assume in the context of data governance that a data-driven approach to health is not necessarily relevant at first sight. And it is precisely a question of dealing with these questions, within the framework defined by the data governance or cooperative, at the individual and collective levels. This framework makes it possible to define the nature of the data mobilised, the terms and conditions of their use and sharing, and the objectives of the approach.
In this way, we can address public health issues at different scales, dealing with scientific issues, governance, recognition and valorisation of contributions, and social justice.
RELATIONSHIPS BETWEEN PATIENTS AND HEALTH EXPERTS
In the testimony you gave, we can clearly feel a desire, inscribed in the culture of third places, to give patients a place in their ability to understand their health in the broad sense and to be able to act on it. It is a question of enabling the emancipation of individuals and the collective by reexamining the way in which knowledge is constructed and transmitted.
In your opinion, has the relationship between patients and experts been modified? How do you see yourself today in the landscape of health actors in the broadest sense, from the most institutional forms to the most esoteric approaches? How do you see yourself in relation to these different trends and approaches to health?
Benjamin Chow-Petit: I have been involved in health care for a number of years. In this experience I have seen the importance of the social and human context on the relationship between experts and patients. When the expert gives an opinion, these factors will impact on how that opinion is interpreted and applied. The issue is behavioural and social.
Even in a traditional expert-patient relationship, the social context and the patient’s entourage play an important role in medical follow-up, if only in relation to issues of consent. Similarly, the socio-economic background is a major determinant of health.
The approach to health in the third place is not to try to level everything out. It is about understanding the situation of each individual, expert or non-expert, within his or her social context, and dealing with these situations in a community dimension, through cooperation.
For example, if I am a biologist, I may need to know more about the biodiversity of an area. To do this, I could rely on other individuals in the community who have an interest in this issue, who can pass on and facilitate my approach. And conversely, I can also contribute by bringing to this community my expertise concerning scientific or analysis protocols.
These forms of cooperation help to develop a systemic approach and vision of health, and these facilitations help to avoid the pitfall of siloed approaches that sometimes prove to be brutal.
Indeed, this plural and community-based approach allows experts to rely on levers over which they do not necessarily have control. Beyond their power of authority, experts can rely on other factors, through a greater diversity of approaches and actors, including for example family carers, people interested in psychology, etc.
Developing community health means collectively acquiring a greater diversity of approaches, means and tools. It means considering health as a social fact, guaranteeing continuity, beyond a diagnosis, in the process of taking care.
Interview with Connie and Benjamin Chow-Petit conducted in May 2021.
CC-BY-NC-SA Sylvia Fredriksson
(1) R. Daneel Olivaw is a fictional character created by Isaac Asimov. He is an android robot built to be indistinguishable from a human being. He appears in the novels Caverns of Steel (1953), Facing the Sun (1956), Robots of the Dawn (1983), Robots and the Empire (1985), Prelude to Foundation (1988), Dawn of Foundation (1992), Earth and Foundation (1986), and the short story Mirror Effect (1972) Source: Wikipedia
(2) Complexity science covers a broad field of theories and models for the study of complex systems. It emerged in the mid-twentieth century1 with a focus on the study of heterogeneous systems and their collective behaviour. It differs from the reductionist approach, formalised by René Descartes, which has dominated the physical sciences since the 17th century. Source: Wikipedia
(3) Cozy is a self-hosted, scalable, open source personal cloud platform. It is developed by the company Cozy Cloud. Cozy simplifies the use of a personal server. Source: Wikipedia
(4) MIDATA is a cooperative society whose aim is to promote the use of data for the common good while responding to citizens’ demands for control of their personal data.