User-Generated Health

User-Generated Health

During the Industrial Age, we developed a specific form of healthcare model designed for the mass society of that time. The spread of industrialization, capitalism, urbanization and the increasing importance of scientific knowledge led to the emergence of a specialist scientific medical knowledge. This was a period where the modern doctor-patient balance of power took its current form, as control of medical knowledge passed from the patient to the clinician. Centralized institutions like hospitals became training centers for the new profession of medicine. This is when the whole patient as the object of medical practice actually begins to move out of the frame of reference almost entirely; rather than seeing the patient as a whole person the medical professions started breaking the patient up into smaller and smaller components, first large body parts, then organs, tissues, cells, molecules etc. The locus within the system shifted to a specialized analytical knowledge that is available via formal institutions.

Like all the other institutions of that time, health systems were centralized, rule-bound systems that push out standardized products to passive recipients. The responsibility for the health of the nation was concentrated in these institutions who were seen to be able to manage things through hierarchical centralized structures. The emphasis is on the formal institutions while the informal everyday world of the end-user is pushed to the fringes. Today our health systems and medicines are largely built not to deal with individuals but instead with an average person. For example, when you sit in front of a doctor today the doctor does not know that the prescription will work for you; the results of medical studies are based on averages, while drugs have a different effect on each unique body. This illustrates how the system, in general, is designed to deal with the average person.

Linear Model

This centralized paradigm creates a linear model to healthcare provisioning, when you enter the system you go through a line, from one interaction to the next, all punctuated by periods of waiting.  Often we conceptualize interventions from the supply side, where even in conceptualizing them we talk about them with supply side people, we do not pay much attention to really seeking the demand side people as well but real outcomes are going to depend upon the specific conditions of the end-user.

This linear process the patient goes through involves multiple separate administrative interactions. Each interaction involves a separate call, separate scheduling process, separate trips to a new waiting room, a new clipboard to fill out, new administrative processes; each interaction is separate, the inevitable result of this is that the administration gets overwhelmingly complicated and expensive. Even if it is in the same building even if it is all owned by the same organization it is separate today, for these different domains to actually coordinate they have to go through a lot of effort to do so. To deliver real end-user value you have to organize around patient problems, this means a restructuring away from the silos to horizontal networks focused around the patient; parallel activities all taking place within interdisciplinary teams based around the individual with data and real-time feedback loops. By putting the user at the center of the system we can begin to create systems that are truly user-generated because this structure innately empowers the individual.

The centralized model may have worked in the past but today it is becoming overwhelmed; straining under the wait of its own fragmentation while being presented with a set of health challenges that are more complex and less amenable to this approach. The health issues of today are systemic, they are part of the everyday life of everybody, they are dispersed and spread out, not issues we can isolate, confine and solve for. They are about the choices people make every day, what food we purchase, whether we walk to work or drive, where we live, in the choices we make about the building of our urban environments. Health issues like diabetes, cancer or obesity are about the choices people make but we have built a system that largely bypasses the individual taking their condition as a given and producing products for customers. People are often not consulted in the care that they need; care is just given to people rather than created with people.

Given the exhaustion of the centralized model and the changing nature of issues what is really needed today are user-generated health systems – not just person-centric but user-powered – where the locus of responsibility shifts to the individual. The individual is by default in charge of their health, we then use the system’s scarce resources to empower, motivate and enable them. The shift to behavioral health issues requires the engagement of the patient; a shift from a focus on organizations and prevention to individuals and behavior; to take us from “what is the matter with you?” to “what matters to you?” It is a simple thing but it’s an incredibly powerful thing to know that you’re actually a member of a team who is working with you rather than the target of a team that’s doing it to you.

Emergence

Already a cultural shift is underway in developed economies. People are more connected and they are increasingly interested in their health. A younger generation expects health care to be digital, mobile and at their fingertips. A growing percentage of people no longer want to sit back and be told what to do, they want to play a much more active part in determining their own health pathway, but we find this bumping up against a centralized model that is the complete reverse. The challenge is to actually push the capacities of the system outside the formal organization into the hands of people – pushing capabilities out to the edges of the network, to where and when people need them, to create individuals that are informed, engaged, supported, that are able to create and strengthen informal health systems themselves.

From a systems thinking perspective, it is often best to facilitate an environment where local people and communities self-organize to improve health, leading to positive results that health planners might not have even imagined. Also, because health challenges are complex, and solutions differ depending on time and place, we cannot successfully impose a top-down plan of action and consistently achieve predictable, positive results. Instead, it is often best to facilitate environments where local individuals, agencies, and communities self-organize to improve health.  The key components of emergent outcomes are education, information and incentives that create attractors towards the overall desired outcome of people looking after their own health. Education that helps people understand the workings of their health; information that helps provide visibility to what is going on and creates feedback loops that connect people with the consequences of their actions.

As the influential systems thinker, Donella H. Meadows in her book thinking in Systems: A Primer notes “Missing information flows is one of the most common causes of system malfunction. Adding or restoring information can be a powerful intervention, usually much easier and cheaper than rebuilding physical infrastructure.” Simply looking for and reconnecting the information loops within the system works to realign incentive systems, that are creating many of the negative health externalities of today. The most important feedback loop is the one between the individuals’ actions and the effects of those actions. Much of our health issues are now created by ourselves, lack of exercise, smoking drinking, diet etc. all of these are actions that we choose to take, we often choose the unhealthy option because we are not immediately faced with the real consequences of that action.  For every action, there is a consequence and by linking that back to the individual taking the action we can benefit them for health-positive behavior and inversely make them experience the costs of the negative effects. Images of damage lungs on cigarette packages is one example of this.

To respond effectively to the current challenges the next generation health system needs to be a distributed system, one that enables user-engagement within informal networks; provides people with the information and tools to understand and manage their own health; that works with information based feedback loops to align incentives towards the emergence of the desired health outcomes and in so doing removes a massive section of the load currently placed on centralized health care.

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Systems Innovation

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