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

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

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