October 26th, 2009 by Christian Seebode

Our mind sits in an environment of intimidating complexity. Even if we learn about it every second of our life it’s just impossible to understand it completely. As a patient this huge discrepancy between the mere complexity of the human body and the poor knowledge we possess to handle it is the single most relevant issue in medicine. To get along we employ a number of well educated people to help us understand and manage: doctors, nurses, psychologists and the like. But even accompanied by the best educated people we still decide what we want to learn is best for us. But who tells that? Medical Science concludes from empirical data which is due to the fact that all humans are different and no medical intervention yields the same result. Consciously or not the patient is also in charge. Education is needed to sharpen this view. This is even easier to understand in chronic conditions. Chronic illness connected to wrong lifestyle is often learned behavior and based on misconceptions and wrong motivations. The most important part of the therapy is to motivate the patient to adopt a different lifestyle (i.e. diet, behavior). Patient self management programs develop successful strategies to put the patient in a position to correct wrong behavior (Agency for Healthcare Research and Quality , 2007 ).

This relationship between patient and education in therapy for chronic conditions becomes even more important if we consider the share of chronic conditions in healthcare delivery in general. The majority of cost and effort is consumed by treatment and management of chronic conditions (Joanne E Jordan and Richard H Osborne,2007)(National Health Priority Action Council, 2006)(Ross DeVol and Armen Bedroussian, 2007). This is a paradox situation seen from a high-level perspective. Rising effort for management of chronic conditions on one side is accompanied by an increase of chronic illness on the other side (Ross DeVol and Armen Bedroussian, 2007). This puts even more emphasis on education to trigger learning which seems to be the key to enter and to leave chronic illness.

Patient Centered IT may contribute to lower the threshold for learning in health related situations. The face to face contact with a physician usually is not enough to provide successful patient education. Complexity is high and time is short which lowers the probability for a successful learning experience. With a patient centered education system a patient is able to build sustainable knowledge about his situation.

But might a Patient Centered IT tool for patient education look like?

First and most important aspect is that each patient has his individual context. This is the situation he or she is in. It is influenced by the level of health or illness, skills, disabilities, literacy, work, family, economical situation. Any kind of patient centered software should reflect this in the user model or personalization engine. However this is not enough because some patients do not have computer experience at all. These patients need an initial push to get used to technology. This can’t be done by using IT alone. Patients that do have computer knowledge still need flexible systems to match their skills (Cummings, E., Chau, S. Turner, P, 2009). The goal is to achieve a sophisticated learning context that aligns with the current skills of the patient without overdoing it. Part of this personalization are feedback cycles that control progress in health and knowledge. Thus a patient model is a compound model that references medical and knowledge related information. The difficulty here is that this model needs to be quantifiable in order to support evaluation and feedback.

Another important contribution of Patient Centered IT supported education is the management of personal networks. Contacts support understanding because there’s someone you can ask as a patient. And the system reminds you what has, will and can be done about your problem. People are the source of all the knowledge around and the network is the glue (Frampton, S.B., Charmel, P, 2009). Personal network management not only is a list of contacts but also a toolset of finding related people, interests and problems as well as powerful filtering and visualization techniques. Sometimes the real problem is to ask the right questions. How would a patient know without helpful examples by other people.

There are many more helpful functions possibly involved in learning support. The learning process itself emerges from the management of the information handled. The combination of structured content (i.e. Wiki) supported by search and browse interaction together with individual tagging, commenting and other contributions are the basic steps of an individual learning experience. Conversation with doctors, patients and relatives as well as feedback and sharing content should be possible spontaneously as well as scheduled. The important part is that the patient has tools to compare informational content. This is not possible without semantic information which can be attached explicitly or implicitly. Learning could then be correlated with a change in information sets of both informational and semantic information.

An educated patient is beneficial not only for himself but to the improvement of healthcare delivery in general. Education support in Patient Centered IT means health literacy improvement. Health literacy is defined in Health People 2010 as: “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”. Making the right decisions implies that collaboration between patient and physician is feasible. Patient Centered IT supported education provides guided interaction between patient and physician. This even works when the patient is @ home and can be used to prepare visits if distance is an issue like in medical tourism.


Patient Centered Education improves health literacy by lowering learning threshold in health related situations. It is important to adapt to the patient situation and to allow collaboration through interaction. Progress can be assured by storing individual learning steps referencing informational an semantic content. The patient is guided through the learning process as it is attached to the healthcare delivery process itself.



Links, References

  1. Patient Self-Management Support Programs: An Evaluation , Agency for Healthcare Research and Quality , 2007
  2. Joanne E Jordan and Richard H Osborne, Chronic disease self-management education programs: challenges ahead MJA 2007; 186 (2): 84-87
  3. National Health Priority Action Council , National Chronic Disease Strategy and the Frameworks, 2006
  4. Ross DeVol and Armen Bedroussian , An Unhealthy America: The Economic Burden of Chronic Disease , October 2007
  5. Cummings, E., Chau, S. Turner, P. , Assessing a Patient-Centered E-Health Approach to Chronic Disease Self Management, in Wilson, V, Patient – Centered E-Health, p. 176, 2009, Medical Information Science Refrence
  6. Frampton, S.B., Charmel, P. , Ed., Putting Patients First, p31, 2009, Wiley
  7. http://www.healthypeople.gov
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