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.

August 12th, 2015 by Christian Seebode

Healthcare delivery is in permanent crisis. Worldwide. At least the leading economies of the world are facing a problem that healthcare delivery based on state of the art medicine is not possible in a cost efficient way. At the same time the cost structure is not transparent to the patients or anyone and the main value of healthcare delivery: health is not seen as a common goal which needs permanent attention.

Healthcare without Patients

Traditionally healthcare delivery tries to hide the complexity of medicine away from patients. Even if the patient as a person is involved in diagnostic or therapeutic procedures, he or she inhabits a rather passive role. A patient doesn’t need to know exactly what is going in order to cure him. At least this is a very common practice among healthcare professionals. Not only that this view ignores the significance of a patient in healthcare delivery, this is completely wrong and dangerous too. The participation of a patient in healthcare delivery is restricted often enough only to patient interviews, and medical procedures to some extent as far as the contribution is really needed, as in encounters with a psychological background or just physical presence to get blood samples etc.

Sometimes a patient appears to physicians just as a collection of data. There is a funny saying used among radiologists which tells the whole story:

‘Do the impossible: go and see the patient’

The consequence of such a situation is that healthcare delivery in most situations renders to be less than optimal. The patient is most underrated resource in healthcare delivery. This is tragic because the motivation and participation has a great influence on the outcome of any disease or health related situation.

Defining the patient centered infrastructure

Putting the patient in the center sounds like a good plan. But where exactly is the center? Is it where the patient already is or is it somewhere else? This whole blog is about finding answers to this question. At least about what information technology should contribute to find an answer. To understand the issue of centeredness it seems straightforward to claim a couple of services which may contribute to the well being of a patient, to provide patients with information, communication, education and trust. This is what I call a patient centered infrastructure. Within a couple of posts I will outline the notion of an infrastructure which does exactly this.

This infrastructure is about technology, mostly software, but technology itself is just the road, maybe the car, the driver is the patient. And then there is people needed to teach driving. We start with a simple question. How do you know that you are sick? It is mainly because you don’t feel well. In fact this is your condition and usually you decide that you are not OK. At this point it doesn’t matter if you are sick or not according to medical teaching or diagnostics. The decision itself is enough to justify the following. For the sake of simplicity I am ignoring the cases where someone else tells you that you are sick and you don’t feel sick. That is too complicated right now.

So what you are doing about this? Well the answer depends on your level of health literacy; this is how much you know about the health condition you are in. If you are a doctor you may understand a lot if not you need someone to tell you. But exactly what? Do you want to know everything or just what to do to be well again? This is the next decision you make and it influences your path to become well again fundamentally, much more than the first one. If it is a conscious decision or no is also influenced by your level of health literacy. In fact health literacy is such a central concept to the discussion of the Patient Centered Infrastructure that we need to define it

the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions

The level of health literacy is diverse and there is no widely accepted process or solution to improve this situation. It is an implicit ingredient of the healthcare delivery process. Where patient education is performed it is not a central component of healthcare delivery but mainly an optional procedure.

Healthcare progress is related to the availability of new diagnostic and therapeutic procedures, but also to the development of new delivery methods. Evidence Based Medicine is such a progress that collects the availability of tools and methods of clinical practice into a framework of decision support. The availability of information technology, the internet and tools, services and practices that uses them gives us another possibility to achieve progress. This cannot be reduced to technology alone because the combination of the above has an impact on society and the way we live. But all these advance can’t just be restricted to the provider perspective.

Health literacy is an individual condition and every patient may have different information needs. This is another perspective of the mismatch between current healthcare models and patients needs. Medicine traditionally tries to define common answers to common problem which works for the majority of patients but nor for all. The tendency to integrate more individual traits into healthcare is a way to achieve better outcomes for individuals. Defining and understanding the individual better, not only in terms of informational needs but also physiologically, psychologically and genetically is a very powerful tendency in current medical research (Personal medicine, precision medicine). All this sums up to the tendency of a more value oriented medicine where each patient is able to define the outcome on an individual basis.

So how can patients interact and what exactly is needed? Many patients try to improve their health literacy and skills on their own using Google and the information available on the internet. This has some benefits but causes sometimes the opposite result. Health literacy is reduced because the information available does not fit into the individual situation. Doctors treating these wrongly informed patients spend time and resources to get them back on track. Or patients just make the wrong decision based on this information. For the Patient Centered Infrastructure this is the most important and undisputable claim:

  • As patient I want to find information that is related to my health situation

Suppose that this works and the Patient Centered Infrastructure is able to deliver this information. What am I going to do with it? First thing (but not restricted to) is that you want to share this with somebody:

  • As patient I want to share information that is related to my health situation

Could be my doctor, other patients or family members. Could be everything or just a part of it. Whatever makes sense for me I will define it.

All this implies that the Patient Centered Infrastructure knows enough about me that it is able to determine all necessary relationships for my health situation. It knows my data, my level of health literacy, my goals. It knows me. Sounds like science fiction? Well, it is definitely science but not fiction. We will continue with more aspects in upcoming posts.

The Patient Centered Infrastructure is a model that supports the Patient Centered Process and a service infrastructure that serves the informational needs of patients. But more than that it helps making information a valuable resource for the outcome of patients. We will continue to document the features and aspects of that model in upcoming posts.

A paper of the Patient Centered Infrastructure has been published for IMECS2013

http://www.iaeng.org/publication/IMECS2013/IMECS2013_pp200-202.pdf

[Certificate of Merit for The 2013 IAENG International Conference on Computer Science]

March 22nd, 2014 by Christian Seebode

Very motivating article about the changes to future healthcare systems and how these are related to contributing sciences connected to ICT. My personal analysis would be that ICT powered methods like Patient Centered IT leverages new dreamstime_xs_31010215ways healthcare is defined. Intervention becomes Outcome. However the methods to deliver this new quality are only slowly evolving. There should be no fear about local emerging ecosystems organized as ‘networks which may challenge conventional delivery models’ as cited in the article because the conditions that dominate healthcare delivery may have a very locally and individually  restricted scope.  Upcoming investigations will have to identify the variables that describes each scoped ecosystem spatially, logically, timely and organizationally. Very interesting

http://www.medicine20.com/2014/1/e2/

November 20th, 2013 by Christian Seebode

This a very interesting post about some facts of the drivers of changing healthcare. The impact of information and communication is measurable. However the measurements are often related to coarse grained concepts like healthcare costs. Information in the role of a therapeutical intervention or in the role of a framework for a changing society needs other measures. Value oriented measurements are notdreamstime_xs_28963746 available short term. The development of apropriate methods to measure outcome in a long termin is just not availabale. However it it seems intuitive to see the relationship between the documented difficulty of understanding health related information and the difficulty to follow medical advice. We tend to build causal relationships between documented facts.This may not be the best option. But there is a lot more research needed to identify relationships between the facts that may support a positive influence on health literacy and outcome. Enjoy the graphics.

http://www.healthcarecommunication.com/Main/Articles/b289910b-db75-4704-82c6-badf32f73c0d.aspx

May 5th, 2013 by Christian Seebode

A systematic review of social media for healthcare documents some very important influences and aspects of these platforms when used for health interactions. However social media is only one necessary development that contributes to let patients particpate in healthcare delivery. The whole development is quite new and people are adapting and adopting so that real experience is still small, but taken just the benefits brings to the front what always has been happening dreamstime_xs_21373938and was always part of healthcare: the social character and interaction between people.

Please read

http://www.jmir.org/2013/4/e85/

to get a good overview.

The limitations of social media

Social media tools remain informal, unregulated mechanisms for information collection, sharing, and promotion, so the information is of varying quality and consistency. Similar issues exist with traditional Internet sites, but these issues are being heightened by the interactive nature of social media, which allows lay-users to upload information regardless of quality. Reliability may be monitored by responsible bodies using automated processes, employed to signal when content has been significantly edited, and progress is being made in automated quality detection.

are mainly attributable to the immature nature of the platforms in general. Social Media is just too general pupose to be used for healthcare purposes. There is a need for reliablity, meaning and accuracy. Personalization of content can be achieved but what is missing is the ability to handle the intense nature of medical knowledge. My approach is the complete Patient Centered Infrastructure which i will document in this blog

May 5th, 2013 by Christian Seebode

This blog is about Patient Centered Information Technology. It assumes that there is a true and realistic benefit for people using information technology for their healthcare compared to those that doesn’t. This may be hard to prove but with more and more people engaging in this and havin the possibility the culture of healthcare is changing making this a reality. However it needs basic access and technological support for everyone. This study depicts the situation for people not having enough resources to participatedreamstime_xs_21179918

http://www.jmir.org/2013/5/e93/

Given vulnerable low-income homebound older adults’ substantial health and mental needs, examining their ability to search for high-quality health information/resources and make informed decisions about applying the information to improve their quality of life may be particularly useful.

Internet access and education must become a first order resource for healthcare and should be paid by health insurance plans and considered by welfare organizations. Just like any other measures that improves outcomes.

April 14th, 2013 by Christian Seebode

The following study contains some promising results

http://www.jmir.org/2013/3/e65/

Patients with full EHR seem to be encouraged to particpate more in healthcare delivery. The EHR access triggers some behaviour to improve health literacy and active participation to cope with and handle zhe information contained in EHR. This is all in line with the concepts of the Patients Centered Process which i will document in a follow-up post

Especially this is important:

Concern about workload is likely more complex. Patients’ accounts suggest that sharing all records reduce workload in some areas, for example, fewer visits or decreasing requests for copies of records. At the same time, participants’ experiences also challenge traditional roles for patients and physicians.

This references a change in culture and is related to the effort done in healthcare delivery. Patients claim a different role in an active position.

October 11th, 2012 by Christian Seebode

Rethinking the process how modern healthcare was founded by social welfare actions somehow opened my mind ybout the fact that participation is a central issue in well being. Healthcare delivery is based on moden technology and science for a number of reasons at least in the western societies. It is proven that this is a succesful path. However not alwas the most effective. On the other hand the revolution to establish a healthier society was that healthcare systems were based on some kind of risk sharing or insurance system. This is all about money, because in the end illness and treament costs money. But the core of these systems are participations between the people involved. I am pretty dreamstime_xs_23050411convinced that modern healthcare is too often reduced to function below optimum due to the fact that a patient is treated as an individual and isolated case. This is reasonabel but leads also to a misconception that social interaction and/or community building is not perceived as an effective tool in healthcare delivery. This article mentions the aspect of marketing

http://www.healthcarecommunication.com/Main/Articles/3fe9d117-6342-4923-a59f-927d43b9b6c8.aspx

In the discussion of their results, the researchers advocated a social marketing approach as a “potential ‘win-win’ situation for both older adults and society. EC demonstrates how marketing principles could be used to guide future health policy initiatives based on older adult national and community service.”

I think it is worth to rethink healthcare delivery as a social interaction among and between enabled communities. Patient Centered doesn’t mean isolated but in the center of attention of a participating crowd. The tools are just about to be invented

March 31st, 2012 by Christian Seebode

I pretty much agree with the general message behind this post

http://journals.lww.com/academicmedicine/Fulltext/2012/04000/Commentary___Lost_in_Translation__How_Electronic.8.aspx

especially i would subscribe

EHRs and other forms of health information technology hold the promise of enabling users to provide more effective, more efficient, more coordinated, and safer care dreamstime_xs_13562516

My concern however is another. Since Healthcare in general runs a bit behind in providing adecuate information systems for the people involved in healtcare processes compared to other sectors, healthcare information models have a tendency to be kind of sticky. The EHR model is a bit old fashioned IMHO. A paper record is a perfect representation of the information model within the limits of paper technology. Diggin into the digital domain an EHR may be no more the perfect representation of digitally processed information. I am refering to the fact that RECORDS somehow relates to a data-centric models. No matter the complexity of the concrte EHR implementation. The notion is still a record.

A better approach would be a process oriented or even better Petient Centered model. Modeling healthcare from a patient centered perspective hepls to break down complexity. An EHR that approaches medicine in general could easily be outperformed by small application models that specifically solve small problems and give specific answes or support specific processes.

Another advantage of the application model is to measure application performance and to model application delivery chains

http://tech.fortune.cnn.com/2012/03/28/how-apps-transformed-it/?section=magazines_fortune

it starts by benchmarking its application performance. This means clearly defining what is, and what is not, acceptable application speed, based on the needs of its users.

  • support processes and people instead of data
  • modeling communication and relationships with information technology takes healthcare delivery beyond the restrictions of ancient delivery models
  • the Patient Centered approach reduces complexity of healthcare with improved performance of healthcare processes
  • the App model further reduces complexity and give a possibility to model healthcare chains
February 3rd, 2012 by Christian Seebode

This post gives a definition of the patient experience

“We define the patient experience as the sum of all interactions, shaped by an organization’s culture that influence patient perceptions across the continuum of care.”

But why so distant? The patients perception may tell him: ‘I am fine’ but next day he’ dead. I think we must be more specific to address the patient experience within Patient Centeredness.

These are some points:

Patients Experience:dreamstime_xs_20366890

  • is an inherent part of the patients health
  • is a primary focus of healthcare because a good experience is an important contribution to a patients well being
  • has to be treated as a primary goal in the healthcare process

These points express patients rights and safety in healthcare. The contribution of technology as Patient Centered IT must comply with the intention of the Patient Experience definition whatever it is. Patient Centeredness expresses the aim of an healthcare architecture with the patients as drivers. Patient Experience should is the fuel needed for driving