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Ligne de vie - 16th Libre Software Meeting 2015
- 1. Ligne de vie and Personal Health Project Philippe AMELINE philippe@ameline.net
- 2. Anthropology I’ve a body that’s apparently really mine, and it’s what makes me me. I number it among my possessions and I claim to exercise full sovereignty over it. But that’s an illusion, because there is no human society in which one thinks that the body is any good on its own. So I think I’m unique and independent. All bodies are engendered, and not only by their fathers and mothers. It’s not made by the one that has it, but by others. It’s not thought of as a thing, not in New Guinea, any more than in Amazonia, East Africa or Europe. My body really mine? It’s it that determines that I don’t belong to myself, that I don’t exist alone and that my destiny is to live in a social context. On the contrary, it has the particular form of its connection with otherness that constitutes the person.
- 3. Egology
- 4. Care place centered reference frame Technical excellency - Treating bodies “Efficient treatment vs Taking good care of”
- 5. Person centered reference frame Health Team ↔ Health Project Life long behavior → Risk management
- 6. Ligne de vie My health project is the concept all organizations must operate as contributors to
- 7. New paradigms of care Cohen, J (21st Century Challenges for Medical Education; 9th International Medical Workforce Conference; Melbourne, Australia; November 2005) The individual → The community Acute disease dominates → More chronic illness /disability Episodic care → Continuous care Cure of disease → Preservation of health Reactive → Prospective Physician provider → Teams of providers Paternalism → Partnership with patients Provider centred → Patient / family centred Parochial health threats → Global health threats The future is only complex if you fail to understand it from the point of view of what is driving the change. Helge Tennø
- 8. Health, what health? Is Health a “humanismly correct” word for Medicine ? Or does it extend to all other compartments of our life ? The paradox of limited holism
- 9. A New Model The person as a set of projects + surrounding teams The person has a global vision… with support from a holistic risk management “motherboard”
- 10. Copernican Revolution From a world where your information is scattered in numerous silos (GAFA + service providers) while you store papers in a shoe box. To a world where your own projects manager federates all contributors. From a world where information is only processed inside organizations with limited view angle and time scope. To a world where you process your holistic information with full control. Ability Reference frame switching
- 11. Conclusion Paradigm shift Open… for all the good reasons we all know Ethic… I don't know what information I host Empowered… you are in control Can we create an intimate web? to higher consciousness
Notes de l'éditeur
- In the eighties, when I graduated as an engineer, Artificial Intelligence was the hot topic. From this time on, I have been committed to build software that can manage and exchange structured data in order to assist its users. In the first years of this century, my main achievement, the Ligne de vie, may have created a new deal in health since several French regions were ready to operate it. Alas, it was killed the moment the French government “nationalized” the concept when announcing the DMP (the French Public Personal Health Record)… that remains an ongoing project ten years and a billion Euros later. This to say that I failed as a startuper but have remained an explorer who, thanks to a bunch of innovative concepts, has been able to discover some promising territories. I will do my best to take you in a little visiting tour and hope you will enjoy the journey.
- The first step will take us to the musée du quai Branly’s in Paris. More specifically to its first anthropological exhibition titled “What Is A Body?”. The team of anthropologists led by Stéphane Breton demonstrated that no human society - including our own - looks upon the body as an entity of strictly individual thought and action. The body is in fact regarded by different cultures as a semi-finished product that must be completed by a social context. In some ancient languages, for example, body parts have dedicated nouns while the body as a whole can only been named through its relations to other member of the group. Such grammatical form, where the “I” is a plural in the context of a relation with another member of the group, is called the dual. It fully disappeared in most modern languages. We will see later that recreating a new form of dual language is pivotal in the proposed paradigm shift.
- A modern instantiation of the anthropological concept could come by the name “egology”, coined by futurist Joël de Rosnay to depict the shift from Web 1.0, based on a e-User, to the Web 2.0, based on a e-Citizen with “my site, my F or G profile… my tribe”. It can be considered pejorative (a modern stance of me, myself, I), but well depicts that, in our modern web 2.0 environment, we usually consider that a person is a body included in a social network. On the web, as a meshed environment, each individual node is surrounded by/connected to a family, friends, (web) acquaintances and service providers. This vision of a person as a dual concept (body + social network) will be both our guideline and our vehicle for the rest of the journey. At this time, we must make
- At first, we will ask ourselves why the care places of technical excellency still consider a person as a body at best… and often as an embodied disease? The answer is to be found in the reference frame the context of care is organized from. A care place is a “box” that sees patients passing by (patients, not persons). All information is recorded accordingly: roles of staff “inside the box”, time frame limited to the scope that extends from in-patient to out-patient, teams organized according to the health problems to treat. It is a “square” (Cartesian) model where, for example, access rights are defined by a matrix of roles (as defined inside this very organization).
- To find a reference frame that fits our model of “a person as a body being the center a her social network”, we must operate a Copernican revolution and imagine a reference frame in “polar coordinates” that moves with the person. Instead of recording information the usual way using fixed camera inside care places, we switch to a “GoPro like” way to envision the world. This reference frame is much different from the one we just discussed for organizations: continuous time (from birth to death) instead of discrete episodes, team members as “who is around me” instead of “roles inside the box”.
- The concept of Ligne de vie was born at the beginning of the century as the information system to operate this patient centered reference frame. We can see on the slide the way a patient's team is described “around the patient”: angular zones separate the various roles (medical doctors, other health professionals, social workers, staff and family) while circles indicate the “proximity level” with the patient. As a team member, access rights will depend on your location around the patient as f(view angle, distance). The Ligne de vie evolved over time from simply displaying “episodes of care” (what we are working on) to a genuine project manager that includes what has been done and, thanks to risk management smart agents, what are the targets. A team and a project manager are two dual concepts. Once combined we could claim that “Your health now can be a personal and personalized project”.
- All this is perfectly consistent with the new paradigms of care as depicted by Cohen ten years ago. To be a little provocative, we can still consider it as a new paradigm since medical doctors are still plainly anchored in the left column while the population has already stepped to the right side. Change agents are seldom found “inside the box” and from my personal experience of continuous learning/testing/failing/improving cycles with the Ligne de vie over the last 15 years, I can claim that change will be driven by the persons (the citizens) and not by professionals or organizations. If there is a prophecy to be told, from Helge Tennø's saying, it is that all public systems that will be deployed in organizations reference frame (be it an hospital portal or a nation wide Personal Health Record) will fail from unexpected complexity. 2005 is both the year Cohen described his new paradigms of care and I had to surrender with the Ligne de vie. We are now ten years later and we can observe that there has been very little progress in the domain. It probably comes from a subtle, but strong paradox...
- Health is the new buzzword, but also a portmanteau word. Most medical practitioners call themselves “health professionals” though they mainly fight against diseases. We can wonder if there is such thing as a health data? Study show that good socioeconomic circumstances are more significant that genetics as longevity factors, even in the same developped country. For example a WHO study showed that a boy living in Calton, a deprived suburb of the Scottish city of Glasgow will, on average, live for 28 years less than a boy born in Lenzie, an affluent suburb a couple of miles away. Education, employment category and lifestyle must be considered as major health data… hence there is little sense to build a system restricted to fighting diseases or even to “wellness” (yet another portmanteau word). In Ligne de vie voccabulary, it means that there is a paradox to consider a person as a whole and to only address her health issues. A “personal projects manager” must include education projects, employment projects, asset management, etc… or miss its target and remain a tool dedicated to health professionals in the organization reference frame. Dual vs Groupal Consciousness norm versus onlyness From
- Ligne de vie's new model includes many parallel projects, each one with its dedicated team. If we consider the real life example of a child with a disabling condition, he is actually being taken care of by three teams: a health team, an education team and a social team. The usual way to go is that they never meet and, moreover, have crucial information been covered by there specific professional secrecy. Since it is natural to have the person herself as the only common member to most teams, it should be possible, however, to inject targets in a project as a consequence of what happens in other projects. In the case of the aforementioned disabled child, it is perfectly sound that his medical condition, as described in his “health project”, leads to injecting targets in his “education project” even if there is no doctor in the education team and no teacher in the health team. The holistic vision that allows for such “automatic target injection” will come from a risk management layer connected to all projects in the way a motherboard would connect a set of extension cards.
- When combining the person centered reference frame and a fully holistic vision, it is consistent to evoke a Copernican revolution. First because the new reference frame now federates organization centered silos that previously considered themselves as the center of a local universe. The rule is no longer to be considered as one among many but as the one who sets the goals that professionals must elicit and prioritize to achieve a true shared decision making. This empowerment from the norm to a form of “onlyness”, a term coined by management expert Nilofer Merchant should open the way for a new level of consciousness. So far, the mogul companies that rule the web (the famous GAFA) have been successful in inducing a “herding behavior” in their customers. If we name “groupal” the language category that allow cattle in a herd or fishes in a school coordinate, we can claim that the web as we know it is fully groupal oriented. To impose the person reference frame would create a brand new web. A meshed environment that is not based on a groupal language but operates a dual language, a language where “I” is always a “we” in the context of a specific relation. This new environment, where privacy is not threatened but, on the contrary, is the pivotal concept will be named the Intimate Web.
- The Intimate Web comes with new rules, and very demanding ones. No need to say that trust is paramount and demands for open systems. The main challenge will come from taking the opposite view of well established behaviors, for example, hosting a Ligne de vie while demonstrating that everything is done to be unable to know what information it contains. It will start small, remain lean and agile as long as possible… but the main blocks have been invented, and some of them tested for years. Feel free to join forces, especially in domains others than health, were I have no specific intelligence.