Power to the People (and Patients)

In previous blog posts, I have often referred to the significance of the doctor-patient relationship. It is not simply my opinion that this is one of the most important tasks that a doctor fulfills. In many of the online debates about the quality of healthcare, and amongst the lectures at many medical conferences, there is an extensive discussion about the value of a good doctor-patient relationship. From the patient’s perspective, it is meant to calm the patient and to give them the confidence that their doctor is concerned about and up-to-date on their medical status. From the physician’s point of view, a good doctor-patient relationship can help make the diagnosis more quickly. Knowing the patient and his or her personal and professional background, adds context to any complaint the patient may have. It is the complete profile of the person that can be critical to quickly reaching the right diagnosis and prescribing the correct treatment.

I could list a long set of responsibilities that a doctor has towards the patient. But I want to address the flipside of the relationship and to discuss the role that the patient plays in improving the health care they receive. There are those who feel very strongly that they do not have any role in their own health care. They feel that it is incumbent upon the physician to simply know [via questions asked and test done] what the problem is and how best to treat it. This is not due to the fact that these patients are indifferent to their own health. Quite the contrary – many of these individuals feel that they are not qualified to diagnose themselves and thus would be interfering with the physician as he tries to manage their case.

There is definitely still an aura around the medical profession, especially when older patients visit their doctor. Whether born of respect or fear or intimidation, there are many patients who feel that any contribution on their part would come across as a challenge to the doctor, and thus perhaps upset their physician. The more a patient feels dependent on the physician, the less they may be willing to contribute to their care. This is definitely a form of self infantilization which many physicians play along with.

But in this day and age, it is more important than ever that patients take command of their healthcare, get informed about their conditions and ask their doctors for any clarifications needed. If a doctor suggests a treatment, a patient should feel encouraged to go home and spend time reading up on their diagnosis and treatment. The end result of a more informed patient is a far more productive visit at the doctor. If the patient presents with even a basic understanding of their own condition, then their doctor does not need to spend time explaining basic concepts. Instead of explaining what glucose is, the physician can jump ahead to discussing the role of insulin in treating a patient’s diabetes.

How does the patient go about becoming more informed? In looking for any information, most of the world knows that a web search can be extremely productive. The term “Google” is probably one of the most universally known words and understood concepts in the world. Also, these days when any person with a cell phone can freely surf the web and read up on any topic, access to information really is not the problem.

Many will say that the problem with patients surfing the web is that there is too much information and that they do not have the knowledge base to filter out all of the poor quality sources. I remember one case when a patient called our medical service in a total frenzy over the text of the radiologist’s report. The radiologist had used an abbreviation that had two possible medical equivalents. The radiologist was in fact referring to a relatively benign finding. But the second possible equivalent of the abbreviation referred to an aggressive type of blood cancer. The patient was now convinced that she had a terminal disease and was infuriated that she was not told so on the spot, i.e. at the time that the imaging study was done. After I explained to her that she had chosen the wrong definition for the abbreviation, she remained infuriated asking how she was supposed to know that there were two options for the same abbreviation.

I think it is clear that patients need to be cautious when reading up on their own condition. One of the most important messages a doctor can transmit to a patient is a simple adage: don’t believe everything you read. Even physicians will struggle with information that they find using general search tools. Doctors will sometimes truly believe an outlandish claim by the writer of an article. Unfortunately some doctors do not take the time to validate these claims and further spread the information. Clearly, even a medical background cannot fully protect you from bad information. So for the patient who is admirably  trying to learn about their own health, there need to be some basic rules.

Firstly, a patient should ask their doctor as to legitimate websites where they can find more information on their conditions. A patient with diabetes might go to the website for the American Diabetes Association and find valuable information there. Free websites like Medscape can be used by both physicians and patients. There are professional sites that require a significant monthly payment and would not be appropriate for many patients without a healthcare background.

As the patient reads up on their condition,they should take notes and write down questions that they still have after they have finished reading. If their doctor has an email service, the patient can simply type the questions into a new email, send it off to their physician and wait for the response. If the patient has an appointment in the next couple of days, then he or she can simply present with the questions already printed up. You can believe me when I say that the vast majority of doctors will appreciate being handed a typed piece of paper with clear questions on it. The appointment can then address these questions to the satisfaction of both the patient and the doctor. The doctor may also suggest further websites for more reading. This type of cycle where questions are posed, and answers given and suggestions for more reading are made, is an excellent way for patients to become self informed and far more productive in their part of the doctor-patient relationship.

Ideally, a computer system would be able to analyze the patient’s medical background and thus automatically provide further reading that is appropriate. Also, the context of the patients health status, understood from various tests and the doctor’s notes, would add a great deal to the quality of the results from an automated computer search. In the future, artificially intelligent systems  will be able to answer questions at a very high level based on a review of the patient’s medical records and the computer’s knowledge of all of the medical literature that is related to the patient’s condition. In this future, the patient might not even need to get further clarifications from the human physician. However, it will take time for computers to fully master the doctor-patient relationship. As such, computers will first provide a very broad information base for the patient, and with this in hand, the patient will then be able to approach the physician and ask very pointed questions that will be most helpful to advancing their care.

Invariably, knowledge is a good thing and ignorance is not bliss. As patients become more knowledgeable and thus more empowered, everyone will benefit. It is within the role of the physician,  especially today,  to help patients become self-aware and to give them tools that will help them better understand their condition, which in turn will often improve compliance with treatment which results in better outcomes.

It is definitely true that a little knowledge can be very dangerous. But when the option exists to validate this knowledge and to expand it in a safe manner, the patient will only benefit.

Thanks for listening.