The IOM report on ‘Improving Diagnosis in Medicine’ that was published last month made a big call to bring the patient into the diagnostic process. This seems to have coincided with a much greater interest in symptom checkers, with new options coming to the market.
We believe that a symptom checker is a vital tool to help patients start to make sense of their symptoms, and therefore be in a better position to decide where to present for medical attention and be able to discuss their diagnosis and treatment options fully with their doctor.
Misdiagnosis - Lyme Disease
The Isabel Symptom Checker has now been available for 3 years and we have received some heart-warming feedback over this time. One of the most interesting cases came to us last week. It concerned a mother whose son took many years to get a diagnosis of Lyme Disease. What was most interesting was that when she tried Isabel with her son’s initial symptoms, Lyme Disease was prominently suggested as a possibility. When she tried Isabel with the symptoms her doctor had thought were relevant Lyme Disease was no longer suggested. It turned out that the doctor had dismissed her son’s painful joints as ‘growing pains’ and, therefore, did not include ‘painful joints’ as part of the clinical presentation on which he formed his initial diagnosis.
This tragic case highlights the importance of patients doing their own research. This is not in order to bypass the doctor, but so they are able to ask appropriate questions and, if necessary, question the doctor’s judgement with well considered views and conviction. In other words, to be a full participant in the diagnostic process. It also should remind us that patients are experts on their symptoms; if a patient thinks they have painful joints and it’s important to them, then it shouldn’t be dismissed lightly.
Which symptom checkers can you trust?
The fact that several new symptom checkers have appeared on the market over the last few months is also a powerful sign that patient engagement is becoming critical. The patients’ challenge now will be able to distinguish between the good and bad symptom checkers. These are the criteria we would suggest you use when looking at which symptom checker to use:
- Are they easy to use? Those sites which ask you endless seemingly irrelevant questions have often been designed by media companies that just want you to spend more time on their site, view more pages and so generate more advertising rather than suggest diagnoses.
- Do they handle multiple symptoms and allow you to enter your symptoms as you describe them? Many symptom checkers can only handle single symptoms or a very limited drop down list of symptoms which often don’t include exactly what you are experiencing. It’s very important you can enter what you think are the important symptoms as the results will be based on what you enter. You should also be able to add whether you have any important underlying chronic conditions such as diabetes as this may affect the results.
- Do they adjust for your age, gender and, if relevant, whether you are pregnant or have recently travelled back from another country? Diseases vary by all of these factors so it’s very important they are all taken into account.
- How many diseases to they cover? Many will only cover a few hundred common diseases. There are over 10,000 diseases known, and that number is constantly growing. This means symptom checkers which focus too narrowly on common diseases may miss something important to you. The Isabel systems cover 7,000 diseases.
- Have they been fully tested? You hopefully won’t need to use a symptom checker very often so when you do it’s worth using the right one, otherwise you may end up worse off. Very few have been tested with their results published in a peer reviewed medical journal. The Isabel symptom checker is adapted from the professional system that has been extensively tested since it first became available in 2001. Over 40 articles have been published validating Isabel as a suitable tool.
Get involved with your health
Whichever symptom checker you use, the most important thing is that you get involved with the diagnostic process. Once you are armed with as much knowledge as possible concerning your symptoms and possible diagnoses, a dialogue can take place with your healthcare provider. This is one of the main findings of the IOM report: “Health care professionals and organizations should partner with patients and their families as diagnostic team members and facilitate patient and family engagement in the diagnostic process, aligned with their needs, values, and preferences.”