“There’s an infinite amount of information out there, but there’s not an infinite amount of quality information,” said an MPN expert.
When patients receive a diagnosis of cancer – especially a rare cancer like a myeloproliferative neoplasm (MPN) – they usually seek out information from their clinicians and online sources. However, according to recent research, patients are missing key facts about their disease. Additionally, the online sources they are turning to might not be accurate.
“Patients have knowledge through their physician and their treatment team and through their own research. But oftentimes, it’s not the specified knowledge that all of us in the field want to have,” said Dr. Naveen Pemmaraju, associate professor of Leukemia at The University of Texas MD Anderson Cancer Center, in an interview with CURE®.
Pemmaraju led research that collected online survey responses from hundreds of patients with MPNs to determine their knowledge on the disease and where they find information about it. He realized that many patients did not know their JAK2 or CALR status – both mutations that can affect prognosis or treatment options.
After seeing these results, Pemmaraju admitted that he and other clinicians should improve the way that they educate patients and loved ones about their disease.
“This is an active area we must all work on,” he said. “(Conveying) basic information, being able to explain it in a personalized way to each patient and family in a way that resonates with them.”
The research also analyzed where patients and caregivers get information about MPNs. The most common responses were Facebook, Google and YouTube, with many respondents also reporting that they look at the blogs of other patients and caregivers.
“Very few of our patients use Twitter, to my disappointment, because that’s my preferred medium,” Pemmaraju said. “A lot of doctors and clinicians and thought leaders such as myself are on Twitter, but many of our patients are on Facebook, YouTube, et cetera. And we’re not there. So that’s a disconnect between what we’re using and what patients are using.”
Looking ahead, Pemmaraju said that he and his colleagues should meet patients where they are seeking information – especially since there is an abundance of misinformation on the internet.
“There’s an infinite amount of information out there, but there’s not an infinite amount of quality information. And that’s what people are looking for,” he said.
Pemmaraju offered advice on deciphering the details found on the internet. First, know the source and become familiar with experts in the field.
Next, people should understand that there is little – if any – filtering and fact checking social media. “You have to have some way to self-filter the information … people oftentimes think that someone on social media is patrolling and policing. Most of these communities are self-directed,” he said.
Pemmaraju and Dr. Ruben Mesa, another MPN expert, started the #MPNSM hashtag, where people can see what the latest updates in the field are. “There, at least you have a trusted source in terms of community discussion,” he said.
Finally, while there are informative and reliable sources on MPNs, patients should never get medical advice from the internet and always talk to their care team instead.
“You don’t want to give or take medical advice on the social media platform,” Pemmaraju said. “Take it offline. If you read something, as a patient, please bring it to your next health care visit.”
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