September 24th, 2017 by Christian Seebode

In part one we learned about the requirements and the need to build a Patient Centered Infrastructure. The central purpose of this infrastructure is to empower patients to participate in healthcare processes. This participation is based on the individual level of health literacy of each patient. Increasing health literacy and offering participation are the main building blocks of the Patient Centered Infrastructure. Information becomes a central resource for the outcome of patient healthcare pathways.

In this part we will have a look on the necessary actions that need to be taken in order to participate and to understand and reflect participation. Traditionally healthcare supports a very common picture of health and illness and what is necessary to be cured and stay healthy (https://en.wikipedia.org/wiki/Traditional_medicine).

Within this commonality resides good and evil side by side. Medical science ever since tried to understand the common things. There’s a very catchy statement that describes the nature of medical wisdom that supports medial practice: ‘common things are common’. Meaning that what you know about many patients helps you to understand the situation of an individual patient. Symptoms, therapies and outcomes are the result of statistical observations and analysis in their majority and that’s OK. However, often enough it is not OK. With the same relentless statistical precision, we find situations that need uncommon, rare and need individual reasoning (https://en.wikipedia.org/wiki/Rare_disease).

As a consequence medical science is on a way to uncover a deeper understanding of the individuality and variability of health, illness and the consideration of any personal situation and this changes the face of medical science (https://www.statnews.com/2017/08/02/randomized-controlled-trials-medical-research/).

But even if we focus on common things and subscribe to the general notion that all patients can be treated and healed according to the prevailing medical knowledge that is based on the observation of populations, groups and communities with a count greater than one, every process with patients is based on individual interactions or at least the individual knowledge of each patient or his health literacy. This is why healthcare delivery was an individual process ever since. And even more than that since medical science builds much more knowledge and wisdom on the parts of a patient than the patient as a whole, there’s enough probability that any scientific understanding of health and illness is still wrong enough given any individual situation.

In this blog post we try to imagine patients as active participants of a process and individual caretakers of themselves. This is an important step. We try to model the patient behavior from the patient perspective and not from the scientific basis. We try to understand patients like consumers of their health demanding information, communication, education, safety and trust and of course treatment. The patient acts as an individual according to or her individual knowledge and beliefs. Apart from what we know about biology and medicine this is a crucial ingredient to care of people and keep them healthy. You can’t treat patients only according to their biology or what is known from that. That would be like flying an airplane just relying on physics. It works but it doesn’t guarantee a happy landing. Customer demand and satisfaction are among the most important influences on commercial aviation and the education and behavior of the airline personnel. Imagine yourself as a passenger always in a state of emergency. This wouldn’t be a desirable perspective. So what is needed for healthcare is what is taken for granted in other sectors, even if this is just a very rough comparison.

But the commercial perspective of healthcare is just one aspect to support a Patient Centered Process. It is an important one but there’s much more to it than meets the eye yet. We begin here to imagine the Patient Centered Process as an important basis to healthcare delivery and also as a tool to redefine the understanding of health and illness. There is a probability that it may host the missing perspectives on individual patients which are necessary to understand the individual nature of disease more completely than before. It connects all participants of healthcare processes into one uniform process model. The steps of the process may be performed by actions, services or other processes. This we will learn walking the process step by step. This blog post gives a summary of all steps; the follow ups explain each step in detail.

The Patient Centered Process

Since the Patient Centered Process is circular there is no start or end. For each patient, the process starts with a different step. The process runs forever in the lifetime of an individual patient and it is important to consider that is already running for each and every one of us just that this has been happening virtually without any technological support for the process itself. And even if there is technological support for some process steps already happening like for example access to an electronic medical record or a patient forum these technological steps are not supporting the process as a whole as long as they are not integrated. But with integration it should converge into a single process where each step represents also everything that happened before. Once the Patient Centered Infrastructure is completely integrated for a patient there is only single process running for each patient and the reason it is running is not a disease or illness condition but the patient himself and his or her experience. We have to be aware that every day, every moment we make choices or learn things that directly or indirectly influences health outcomes. If it is the way we compose our diet or the travel destination we choose or even simpler the amount of sleep we get. Everything counts; everything influences the path we take in relation to a healthy lifestyle.

Recent developments in precision medicine highlight the genetic diversity of humans in relation to the biological foundations of individual disease and health. This opens new possibilities to describe the genetic situation of a patient and to analyze this in contrast to the phenotypical presentation and the clinical findings (https://en.wikipedia.org/wiki/Precision_medicine).

The Patient Centered Process supports a way not only to manage this information between experts and patients but also to add new ways to do research in a collaborative way.

The Patient Centered Infrastructure together with the Patient Centered Process empowers patients because it provides access to information, people and services in a structured way as it channels all actions taken back into the process. The infrastructure provides the technological basis to support education that empowers patients to improve health literacy. This aims at breaking down the silos that medicine and healthcare is suffering from while still ensuring the necessary amount of privacy and trust. The necessary level of protection is also a highly individual aspect. Every patient has an individual understanding of what is to be protected and what not. The Patient Centered Infrastructure provides the necessary tools and fine grained control of individual security. But what does individual behavior mean? And how can it be supported? Even if this gets very complicated in the end

a very simple example may document this. Many conventional therapies only fail because patients don’t understand the rules or just forget about to take the pills (https://news.aetna.com/2016/08/causes-half-chronic-disease-treatment-failures/).

Traditional medicine is not very eager in explaining this or trying to do something about it. Drug delivery is models break it down to its biological or mechanical characteristics. But patients need to take it first before any biological effects can happen. In general behavior contributes a great deal to what health is or means for a single patient or person. In fact it represents the state of health. In fact health related behavior is so difficult to assess and measure for what it means for health outcomes but intuitively there seems to be a huge impact. Medicine and medical science has achieved great results in order to save or improve the life of everyone but there is still no standard way to control health related behavior. How could that be? It can only be the patient itself that effectively controls it. This is why any attempt to deal with the connection between health related behavior and outcome, has to be patient centered. So if we build a Patient Centered Infrastructure that guarantees compliance and adherence in a way that drug effects are within the calculated ranges, for example we need to put the patient in control and we already do something big. But we want more. The traditional way drugs are designed and tested and applied is not patient centered at all. Imagine a situation where the whole Patient Centered Infrastructure is able to deliver the same outcome drug therapy does or even better, the information contained in the Patient Centered Infrastructure is able to simulate the individual path of patients. This is what we want. But this is a huge endeavor. However I believe this is possible. With the Patient Centered Infrastructure as a tool the picture of health and healthcare becomes more and more complete because it takes all the information into account that was left aside so far but its importance can’t be underestimated. But let’s keep it simple for now. We actually are learning, we don’ know yet exactly how everything works out together. But we can propose the ingredients.

And this is how it works. The steps of the Patient Centered Process that contribute to the outcome are the following:

  • Profile. Profile references all the necessary actions to collect health data and access them again at any stage of a healthcare process or any step inside the Patient Centered Process.
  • Information retrieval. This step is fundamentally different from the Profile step because it contains the possibility to identify more information than just directly the data that is managed by the profile step. The intelligence that is needed to do this could be contributed by algorithms or human beings or anything else with the ability to do this. Information retrieval is a very individual process and not only a technical one. It connects the profile information, any other relevant sources and the individual knowledge or health literacy of the patient accessing the information
  • Knowledge Management. Collects, formalizes and manages the knowledge needed to associate data, information, behavior and literacy. Knowledge is a first order artifact inside the Patient Centered Infrastructure and not only something that is encapsulated inside science or human brains. It is generated on the fly but persists after the fly. It is important that every patient knows what he or she knows. Knowledge management helps to organize this important resource.
  • Education. All the actions necessary to produce reliable and intelligent behavior, knowledge, literacy and empowerment. This means not only for one patient but for the whole system. Educational support should be able to improve outcomes directly. It can thus be considered as a kind of therapy in the broader sense. But in many cases this is not enough. Since knowledge is a primary resource in the Patient Centered Process the need for education can be assessed and the educational action can be planned on an individual level
  • Medical Services. All actions that are related to health interventions that are not covered by the other steps. Usually performed by health professionals but not necessarily. Even more important the medical services are subscribed and ordered by the patient directly and not by any party acting on his or her behalf. Within the process the need for every medical service becomes very transparent and its effect completely understood. Examples are second opinion, lab orders, consultancy, imaging services or even genetic sequencing.

This is a very coarse process model. It is possible that it will be extended according to process innovation. But for now that’s it. Behind the steps there is a quality framework that ensures the quality and outcome of the whole process. This and details of each step we be describes in the follow up posts.

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