Dr Google can be beneficial for people with rare diseases, new research finds

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Using the internet to diagnose rare health conditions or diseases could be beneficial, new research shows. Source: Shutterstock

If you’ve ever noticed a lump or bump on your body or felt that something wasn’t quite right, chances are you’ve Googled your symptoms in the hope of finding out what’s wrong with you. While health professionals generally discourage people relying on the internet alone to self-diagnose health conditions and medical issues, new research from the Wake Forest School of Medicine claims the web can actually serve as a pathway to diagnosis and care for people who suspect they have a rare condition that hasn’t yet been identified by their physicians.

Researchers explained that rare inherited conditions aren’t often diagnosed correctly by primary care physicians and specialists because the conditions are so uncommon, meaning that professionals with experience often live in a different location to the patient.

“While online searches can frequently fail to provide relevant or correct health information, the internet does offer those with rare disorders a way to find the rare specialists interested in a particular condition and obtain accurate information about it,” study lead author Anthony J. Bleyer said.

The study, published in the Genetics in Medicine Journal, analysed 665 referrals made between 1996 and 2017 to a Wake Forest School of Medicine research centre, which specialises in a group of rare inherited conditions that prevent the kidneys from functioning properly. While 40 per cent of referrals were from health care providers at academic medical centres and 33 per cent were from non-academic practitioners, researchers found 27 per cent were self-referrals from people or their family members without a diagnosis who had concerns about inherited kidney disease and who contacted the centre directly without being prompted by health care providers.

It was also found that 24 per cent of patients who referred themselves to the centre tested positive for the kidney disease, compared to 27 per cent of patients referred by academic centres and 25 per cent of referrals from non-academic providers, with Bleyer explaining: “The similar percentages of positive results from the three types of referrals indicate that actively pursuing self-diagnosis using the internet can be successful.”

While researchers acknowledge that the latest research focused on just one centre that specialises in a single rare health disorder, they also explain that the internet can still prove beneficial when it comes to uncommon conditions.

“The availability of focused information about rare disorders on the internet may lead to increased diagnoses of these conditions,” Bleyer says. “Centres interested in rare disorders should consider improving their online accessibility to the public.”

However, other research shows that using online search engines to self-diagnose more common health conditions may provide misleading results which can do more harm than good, with recent research from the Queensland University of Technology explaining that one in 20 of Google’s 100 billion searches a month is health-related and as many as 35 per cent of US adults use the internet to self-diagnose medical conditions.

That study claims just three of the first 10 results on Google are deemed “highly useful” for self-diagnosis and that only half of the top 10 Google results are relevant to the self-diagnosis of the medical condition. People generally keep searching until they find an answer and can receive wrong advice that can be harmful to their health.

It’s always best to talk about any health concerns or symptoms with a GP or health professional – even if you’ve researched symptoms online – to ensure you receive the correct diagnosis and proper treatment or management plans.

Do you ever use the internet to self-diagnose health issues? Has it been helpful, or do you find the information you usually get is wrong?

Important information: The information provided on this website is of a general nature and information purposes only. It does not take into account your personal health requirements or existing medical conditions. It is not personalised health advice and must not be relied upon as such. Before making any decisions about your health or changes to medication, diet and exercise routines you should determine whether the information is appropriate in terms of your particular circumstances and seek advice from a medical professional.

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