Information, communication and education

Having the right information @ the right place @ the right time is usually what the doctor claims for doing an appropriate job for the patient. Doctors act on behalf of the patients needs. But what exactly does this mean? It implies that doctors know the needs of the patient. They know this from a short interview, a medium investigation and a long history. But most important is their experience being a health professional. The doctor searches for patterns in the patient data and forms a working diagnosis. To assess the prognosis he uses empirical data. One way or the other a physicians work is to correlate information in the absence of exact knowledge. The quality of this work correlates strongly with the quality and completeness of data.

But before I focus on that let’s just raise another question. What is the patient looking for? Patients come to see a doctor because they have something to complain about. They do not feel well, they are ill. They trust their doctor to be the right person to help. Some guys would help themselves if they only could, some won’t. In fact trust in this situation can be a healer. And this is important. Trust substitutes in the absence of control.

Now let’s put the two perspectives side by side. One is the doctor’s perspective on the health of the patient using experience. The other is the patient’s perspective on his situation unable to help himself and longing for trust. First observation is: no one really knows what’s going on. Having said that it becomes obvious that this is the default case in medicine in fact the whole science is based on probabilities. No exact knowledge. Not at all, on either side. But the probability works out. Usually. Second observation is: Trust is needed on either side too. Patient trusts doctor and doctor trusts science. This immediately follows from the first observation. This relation suggests the transitive assumption that the patient trusts the science too. But is this important? Can we just connect the patient with science and the effect would be the same?

And here comes the third observation and the most important one. The whole situation is usually triggered by the absence of health on the side of the patient. If we change this condition the whole situation becomes unreal or virtual. But why? That’s a habit. You don’t need your doctor if you feel well or you are not an Olympic athlete. But do you? In fact much of the needed trust on the patient’s side would be changed self-trust if the patient learns to control the personal health situation when he or she is OK. How? This rolls the discussion back to the initial claim. For the patient having the right information @ the right place @ the right time is much more important to increase his well-being and satisfaction with health services. (see [Megan J. Hartman (2006)] for a discussion of electronic health records within this context).

Prevention is much more desirable than cure. Staying well is better than being ill. And if health is more than the pure absence of illness, health should be the focus of the attention and not illness. Why not use the whole working physician patient relation in situations when everything is OK? The doctor is able to collect more and better patient data and trust is the result of a lasting relationship and not of probabilities. But that’s the hard bit. In most countries and relationship this is not supposed to be the normal case. There’s a lot to be done to make this work. And what is the motivation for the patient ? Health as motivation doesn’t seem to be strong enough to compete with illness for the attention of the patient. I believe that might be the wrong question. Somehow the classical face to face personal relation gets transformed if why apply online communication. There seems to be a native motivation to share information online (e.g. Wikipedia, Facebook). This seems to be related to the low threshold of participation among other things (see Why people participate in online communities By Ayelet Noff on 24th May 2008).

However the health vs. illness ambiguity might release additional forces for participation which is related to an establishment of supportive behavior [Johnsen JA, Rosenvinge JH, Gammon D.(2002)]. The role of Patient Centered IT is to uncover these forces in order to match the tendency to share online with the requirements of a supportive health related situation. Or to channel the forces that drive online sharing into a motivation that supports health related patient self management instead of managing just illness. This is not an easy task because health related topics may be a source of embarrassment which results in avoidance of seeking help [Ginis, Kathleen A. Martin & Leary, Mark R. (2004)]. Additionally this is a claim confined to a growing but still small community : People that are able to access online resources. Thresholds must be lowered for access but still protect privacy, security and hence trust. But this may have a different meaning in a networked situation.

The behavior of the participants must change. If the trigger is not illness any more the patient tries to behave like a client looking for quality assistance. He needs access to information and communicates his needs according to his knowledge. We have to analyze the patient situation better in order to change it and to support it.

Conclusion

Online Patient Centered information sharing and communication bears lots of potential to improve health related situations. The key factors that drive online sharing have to be channeled to improve the relationships between patient and physician and among patients. In fact the base for learning is sharing. All aspects of online interaction can be suspect to improvement if they are valued as a shared asset. Threats exist but should not be the source of wisdom in the first place. Chances are a network or community may develop a new and totally unknown context of quality, security and trust. This can only be found by experimental design and research.

Patterns:

Sharing for discovery

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