Living in the information age is a double-edged sword for people living with chronic health conditions and cancer. The enormity of this situation has never been brought into sharper focus than during this global coronavirus pandemic, which weighs additional challenges into the mix in ensuring health information is both digestible and, importantly, credible.
That’s according to Andrea Eidelman, Chief Executive Officer at stomach cancer patient advocacy group, Debbie’s Dream Foundation: Curing Stomach Cancer (DDF).
“People are thirsty for knowledge,” she says, adding that it is the responsibility of groups like the foundation to ensure patient information is credible and health literacy appropriate.
“We have updated our website in the past year and are finding that people are coming to us early in their cancer journey. They are getting their diagnosis, and within a couple of weeks they are on the internet looking for support,” she adds.
“When people Google ‘stomach cancer’, they are often faced with reams of information and statistics that can leave them distressed,” Andrea explains.
Because of this, DDF works with a medical advisory board to ensure the information it offers through its website, webinars, and symposia is not only cutting-edge but accurate and up to date. “We provide information from the top scientists, researchers, organizations, and physicians in the field,” Andrea notes.
Making information accessible
Accessibility of information, both in terms of geography and understandability, also needs careful attention.
To this end, DDF provides live digital access to all educational events. It adds recordings of webinars and symposia to its website and shares these through its social media channels, so they are readily accessible.
The team also works with physicians and researchers who provide content to help them understand the patient and caregiver audience.
“Most patients have a difficult time understanding the medical jargon presented by physicians during the symposia and webinars,” Andrea comments. “Therefore, we make information more digestible so patients can understand the information and meaning of the presentations.”
Topics are decided according to patients’ needs, from nutrition to psychosocial support, palliative care and clinical trials. On top of this, the foundation offers an interactive approach to education.
“At symposiums, for example, we have panels where patients who are there in person or are taking part online can ask the experts specific questions,” she notes. “It’s not just the doctor presenting slides for an hour. It’s about engagement.”
“That’s very important, and it makes sure that patients get both value and knowledge,” Andrea says. “Every patient, family and situation is different, so it’s important to be informed about stomach cancer so patients can participate in shared decision-making, particularly in these challenging times.”