As we’ve become a tech-savvy society, we’ve begun to utilize online resources for medical research.
From determining whether that ache in your side is appendicitis or a pulled muscle to discovering the symptoms of pneumonia, we use the Internet to gather information on what ails us. This makes us more informed consumers – in some cases – but not always healthier ones. In order to derive the most benefit from online resources, we need to know how to use them intelligently.
Why online research is an asset
Health care information on the Internet comes in two flavors: there are simple facts that you can search, and there are dynamic lessons that you can learn from engaging in conversations with health care professionals and other patients. Searching for the facts about a disease or symptom can provide awareness and knowledge, but these resources often come with little context and even less feedback. Social interaction allows you to ask questions, focus on nuance and ensure specific understanding.
However, information isn’t the only thing patients are looking for when engaging with others online – they also need support, encouragement and an emotional connection to others who have gone through the journey of diagnosis. The ultimate value of patient communities is that they bring patients and their experiences together to emphasize the human touch at a time when they’re most vulnerably human.
The drawback to self-diagnosing
The drawback to self-diagnosing via online research is that people are just as likely to misdiagnose themselves as they are to hit the bull’s-eye. Medicine itself is far from perfect – it’s called “practice,” after all – but the training that a physician undertakes and learns from throughout decades of practice cannot be matched by even the most careful information search. A patient may, in rare instances, develop a surprising level of expertise about symptoms, a disease or a treatment method, but the reality is that self-diagnosis is a sure path to worsening outcomes and prolonged suffering. Rather than expediting your treatment by researching it yourself, you’re likely extending the time you’ll grapple with your symptoms.
Each of us must become empowered in handling our own health, but empowerment is not the same as ignoring the screening, testing and diagnostic options available in medicine. Think of yourself as an investigative reporter: The more questions you ask, the better informed you will be. To that end, your best bet is to think of online research as just one tool in your arsenal.
Search reliable health care sources
Those tools are only as useful as the information they provide, so it’s essential that you distinguish reliable medical sources from less legitimate ones. When researching, keep these tips in mind.
- Take note of the type of site that you are searching. For example, a “.gov” suffix means something different from a “.org” or a “.com.” This will clue you to on the site’s mission, as there are restrictions on .gov and .edu sites that make them unique.
- Try to “triangulate” whenever possible. You should look for two or three different resources that tell the same story.
- Look for original sources. Health care sites sometimes present a digest of information or simplified messages, but the empowered learner will keep a critical eye out for where they’re getting their facts.
- Look out for reporting that seems too good to be true. If you find a site that focuses only on the miracle benefits of a diet, an exercise routine or a supplement, you should realize you’re only getting half of the story.
The key is empowerment
We’ll all find ourselves playing the role of patient someday. You need to be as informed as possible about what you want and need – and then find a health care team that listens to you so you can form an effective partnership. You can be an expert in your experiences and symptoms, but you must allow the health care team to be the experts in diagnosis and treatment.
This doesn’t mean that you can’t rely upon others for support. We’re just beginning to understand how peer-to-peer online patient communities can influence health care, but there’s little doubt that they have a real impact. Studies of behavior change suggest that social norms and peer feedback are fundamental drivers in both the healthy and unhealthy decisions we make. If we’re open to sharing, we can seek support from those communities that can best help us make smart choices.
- Find a community with patients like you. Look to disease advocacy groups for a list of websites with disease-specific communities, or visit a site like Parentslike-me.com to see if a group’s already been formed.
- Surf through sites to see how robust the conversations are. Many people find that their questions have already been asked and answered dozens of times — verification that they are not alone.
- Look for engagement and intelligent questions/answers. These details signify that the group will give support, as well as a balanced look at information.
- Document what you’ve learned. Don’t try to explain what you think you learned to your physician; show her what you read.
Every second, hundreds of people are being cast in the role of patient – a role for which no one rehearses and no one auditions. Becoming empowered in your health information is the best path to regaining control. This is the irony in patient empowerment: We are best positioned to take ownership of our health when we accept the reality that we cannot do it alone.