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Patient Care

Tips for Patients Navigating the Net

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Hearing back from a medical test or receiving a diagnosis is never easy, whatever the result. It’s not uncommon for patients receiving bad news to report a ‘blank mind’ feeling: It’s called acute reaction to stress, and one of the symptoms is the inability to concentrate. In other words, when the doctor is explaining what’s wrong and the potential avenues of treatment, you’re not really in a position to process that information. By the time you get over the shock, you’ll likely be at home and wanting to know more about your condition. Most of us turn to the Internet in search of answers.

No online forum is a substitute for a doctor’s in-person opinion, but some of them are useful.

But it’s no secret that the Internet can be awash with misleading or outright false information. At times it can be tough to navigate through the pseudoscience to get to the hard facts, a quest made more cumbersome in the wake of receiving a diagnosis you didn’t want.

First things first, it’s important to remember that no online forum is a substitute for a doctor’s in-person opinion. But some of them are useful, especially for learning how to cope with an illness, where to look for support, and ways to cope. It’s important to know where the information is coming from, that’s why we suggest it’s wise for your first port of call to be an official organization.

You should be especially suspicious of articles suggesting that food or herbal remedies can cure something. This seems to be an exceptionally prevalent theme when searching for information about cancer. It’s true that certain foods can help you get through chemotherapy, and a healthy diet can only ever be good for you – but it’s extremely unlikely that just eating ginger will get rid of tumors. Information on the Web is free, but the buyer should still beware.

We show you some of the characteristics that make a website a reliable source of useful medical information.

On that note, we present a few sources of information for different conditions. The intent is not to present an exhaustive list; rather we show you some of the characteristics that make a website a reliable source of useful medical information.

Autism

The Simmons Foundation Autism Research Initiative (SFARI) is a fount of knowledge for those diagnosed with autism, and their loved ones. Its news section is an editorially independent setting for the discussion and evaluation of research centering on autism – and the reader comments tend to be unusually well-informed and on-topic. They also have a dedicated community forum and blog, for which you need to be vetted in order to participate in. This presumably helps keep the standard of information to a high level.

Mesothelioma

Just because a forum or website isn’t linked to a well-known foundation (like the American Cancer Society) doesn’t mean it’s not worth reading. It just means you should scrutinize the source of information a little harder. The Mesothelioma Cancer Alliance is a good example. The information on the site is useful and comprehensive,  it answers many questions that someone recently diagnosed with this cancer might have. Mesothelioma is a cancer linked to asbestos exposure, and when you take a second look, you’ll see the alliance was created by a law firm that specializes in asbestos litigation. That doesn’t mean that they’re presenting misleading facts or inaccuracies, it’s just empowering to know where the information is coming from.

Huntington’s Disease

As is the case with a lot of forums, the best ones tend to be tied to an organization with a respected reputation. The Huntington Disease Association in the U.K. is an organization dedicated to offering practical information and emotional support. They also host a list of other reliable resources independent of the association. They have a community forum that offers a wealth of support and suggestions for how to cope with the disease from others diagnosed with the condition.

Amputees

No one is better placed to understand the frustration that a loss of limb brings than someone who is going through the same situation. The Amputee Coalition offers a service called “Certified Peer Visitor Program.” The coalition trains and endorses amputees to visit and help those struggling with their infliction. They also offer online resources specialized for each amputation level, from loss of fingers to entire limbs.

Motor Neuron Disease

The International Alliance of ALS/ MND Association has a comprehensive online library of materials and information, though it can be hard to sieve through. The Motor Neuron Disease Association (of the U.K.) offers a more user-friendly experience with the opportunity to talk to other MND patients online through their discussion forum.

Use the comments section below and tell us about your favorite sites for medical information, and what makes them particularly useful for you.

 

2 Responses to “Tips for Patients Navigating the Net”

Lauren

Thanks for this, proved to be a help in searching for where to turn for reliable information. It’s true that you must be careful not to believe that just eating one kind of food will cure you of a disease.