Patient Destiny

Where do I go for support?

Over the past week of posts, I have tried to present a strong argument for the need for patient empowerment. To be sure, more work and research needs to be done so that new information systems in the future involve patients in system design and also measure the health outcomes that result of this empowerment.

The first question many people have asked once we have provided an overview of Patient Destiny is - what's the first step? "This philosophy may be great and all, but how do I do it?"  "How do I start to begin to take control over my healthcare?" "How do I get to access information?" "Will my doctor provide me with the information that I need to assist in the decision making?" "I want it but how do I become empowered?"

These are very important questions, of course, but the answers are not so straight-forward! This will take work and much time - but we must begin now! Over time, with more and more patients demanding access to their personal health records (or PHRs) the healthcare delivery system will be forced to adopt technologies that provide the patient access to much needed information pertaining specifically to their own health. And this is only part of the solution: in addition, patients want to know about options (with treatments, second opinions and networking with other similar patients) in order to make very informed choices.

Does Information make me Better

People need infromation to support decision making. For example, how do you know what clothes to wear in the morning (e.g., shirt, sweater, jacket, overcoat) if you don't know what the weather is expected to be that day? Information access, retrieval and processing is critical and is often overlooked as the first step in any decision making process.

For patients, information comes in many forms and from many sources. We can obtain information that is very generic in nature - about food habits and eating effectively. We can learn more about our illness through various periodicals, books and websites that describe the very nature of the disease (or condition) and the treatment options. We can even gain information from other people that have had similar experiences - more and more websites in the health domain are supporting this form of social netwroking.

Perhaps the most powerful form of information, however, will come from access to your own personal health information. This means that places where you health data reside (such as your doctor's office or your clinic or hospital) must allow you computer access to your information. As you can imagine, there are many hurdles which forces delays and abandonment of some significant eHealth applications to date. In fact, outside of some rare cases and often with only partial implementation (usually on a pilot or research basis), this has yet to be developed globally.