#LCSM Chat Topic 4/20: Online Cancer Education: What are the Best Tools & Current Limitations?

chattopicLike just about every other industry, medicine has been transformed by the still evolving trend of greater education and empowerment of patients and caregivers. The “democratization” of information, making information available to everyone that was previously only the province of self-limited professionals, makes it now possible for the general public to buy airline tickets, books, music, even houses from new sources. In some ways, cancer is an ideal setting for patients and caregivers in which to seek online information – the stakes for doing better are extremely high, and there is usually time to gather information before intervening.

But gathering cancer information also has many challenges. First, there is far too much misinformation out there, perpetuated by people who profit by selling easy answers to hard problems, by spread from mass media or even investigators who gain by generating hype beyond what is justified, or even sharing by well-intended family and friends who have more enthusiasm than knowledgeable insight to press upon cancer patients.

Second, medical information is complex. Much of the information online is directed to medical professionals and financial analysts rather than to the lay public, and this content is typically filled with statistics and language that are often unfamiliar to those not well trained in science.  Much of what is readily publicized also originates from sources that have a significant stake in the outcome, whether a pharmaceutical company that stands to profit handsomely from their message, investigators who raise their visibility and career prospects by overstating the significance of the results, or institutions that promote their work and treatment options in a way that can be marketing more than scientific news.

The consumers of this content are caught in the crossfire. During the upcoming #LCSM chat on 4/20, at 8 PM Eastern/5 PM Pacific, we will discuss how patients, caregivers, and health care professionals collect the information they use, whether there is sufficient content available at an accessible level, what format(s) are most valuable and sharable, the role of online patient communities and information shared from other patients vs. content created by medical professionals, and how the local oncologist and medical team respond to (self)-educated patients taking on a more active role in their management.

Taking all of this together, we will plan to tackle the following questions during the #LCSM chat 4/20:

T1 How much do people weigh the source for qualifications & potential conflicts of interest? Can you trust most online cancer info? #LCSM

T2 What are most valuable formats (e.g., video, text blogs, discussion forums) to pts/caregivers? Which sources are doing it best? #LCSM

T3 Do online groups offer unique value? What insights do ppl get from pts/caregivers that don’t come from content produced by HCPs? #LCSM

T4 How equipped are pts/caregivers to review med content like journal articles/abstracts? Any tools to increase med/science literacy? #LCSM

T5 Are local medical team members welcoming or dismissive of other sources? Are people still told “don’t look online”? #LCSM

Please join us for what should be a lively discussion. If you’re new to tweet chats, this primer will help.

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