The first thing many patients do upon experiencing symptoms is to seek information online to try to understand what may be causing their symptoms, how serious it is, and what they can do about it. This time spent searching online increases exponentially the longer a patient goes without being able to find a diagnosis, with an inflection point once a patient realizes that his/her condition may be serious. But while there has been a proliferation of online health tools over the past several years, very few of these are actually intended for, and effective at, assisting with the process of diagnosis. This leaves these patients short on options and represents a significant opportunity for web-based health tools to deliver value.
With the onset of any condition more substantial than a flu or cold, most patients will Google their symptoms to see what they may have. Unfortunately, this is largely ineffective for most conditions. Patients often have difficulty identifying and describing symptoms and understanding the information they read about a condition. Cyberchondria, a Microsoft Research study of consumer use of the internet for diagnosis, concludes that patients frequently misinterpret health information online and that trying to self diagnose can even be detrimental. Additionally, significant symptom overlap between conditions and high prevalence of nonspecific symptoms such as “abdominal pain” or “headache” mean that using search tools to try to assist with diagnosis is largely ineffective for those untrained at interpreting complex medical information.
These limitations also extend to health information sites such as WebMD or Healthline. While these services can be good sources for general health information, they are largely limited to basic information about treatments or conditions and their diagnostic tools are highly limited. Informational sites from the Mayo Clinic, Cleveland Clinic, and Harvard Medical School provide more sophisticated condition overviews, but expect to address the issue of diagnosis in their clinics.
Yahoo and Google Groups, other condition-specific message boards, and patient social networks can be valuable ways for patients to share information. There are groups for nearly every condition and many provide helpful insight into the aggregated experiences of members, accelerating the learning curve for new patients. At the same time, patients must be cautious of much of the information presented through these sources. Beware individuals with agendas (e.g. pushing “miracle” cures) and focus on the posts that provide links to reputable sources to back up claims. Also, patients should be aware of some of the psychological challenges associated with their status as a patient. Patients tend to want to believe those doctors (or other sources) who provide good news and disregard the ones who do not. This is natural, but not always accurate or productive. In a similar manner, patients may choose to attribute negative side effects of a new online pharmacy to evidence that it is working (e.g. a “Herxheimer reaction”). Patients are in a difficult and vulnerable situation, but keeping these challenges in mind will help them to accurately interpret information to give them the best chance of securing a diagnosis.
Cleveland Clinic and Partners Online (a collaboration between Harvard, Mass General, Brigham and Women’s, and Dana-Farber) have developed valuable remote second opinion services for patients (see Diagnosis Tools section). These services involve patients (and/or their doctors) sending in their medical record with a specific question, whether it is to establish or confirm a diagnosis or to determine the best treatment. For a fee, specialists at these medical centers then review the files and issue an opinion. In a retrospective study of the first year of this service, Kedar et al found that 5% of patients using Partners Online received a change in diagnosis and noted that the implications of this for patient prognosis and cost of care were profound. This demonstrates not only that remote diagnosis is possible once sufficient health information is collected, but also that it can be extremely valuable in terms of health and economic outcomes. These services are currently limited to a handful of conditions, tend to be more focused on treatment than diagnosis, and are generally not covered by insurance, but they have helped a large number of patients and represent an important step in the right direction by allowing individuals to access top quality care for their condition, regardless of location.
While online tools can be extremely useful adjuncts and information sources, there are few effective resources aimed at resolving complex diagnoses. Nonetheless, the early success of online second opinion services points to great potential to use the internet to expand these applications. As use of digital health information and acceptance of telemedicine continue to grow, I expect that we will see the provision of a broader array of health services online, including those to assist with complex diagnoses.
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