Safety net: How social networks improve the world of medicine for cancer patients

Cancer patients – from early diagnosis through treatment and beyond – often have many medical experiences that don’t find their way into the EHR.

By DANIEL VOROBIOF
Identification of cancer cells using Micromedic's CellDetect platform (photo credit: MICROMEDIC)
Identification of cancer cells using Micromedic's CellDetect platform
(photo credit: MICROMEDIC)
A cancer patient’s journey is complex, intricate and sometimes confusing. This is especially true as cancer is considered to be a life-altering condition that impacts the physical, emotional, social and economic aspects of patients and their families.
When it comes to diagnosis and treatment, Electronic Health Records (EHRs) serve an important purpose – providing up-to-date information about patients and streamlining coordination between different hospitals and clinic departments, with the goal of improving diagnosis and care. However, while EHRs are a crucial step toward value-based healthcare, they are intrinsically limited, because they only capture half of the patient’s picture: the physician’s perspective.
Cancer patients – from early diagnosis through treatment and beyond – often have many medical experiences that don’t find their way into the EHR.
Why are many patients not forthcoming when discussing complex and personal topics with their doctors? The reasons for withholding information varies from person to person, but it is not uncommon to hold back due to discomfort and embarrassment.
Controversial or highly personal topics can be particularly difficult to discuss openly. In fact, many patients feel much more comfortable sharing and discussing this information anonymously with other patients who are in the same situation, rather than with their own doctors. That being said, the question that arises is, how can healthcare systems gain better insight into how cancer patients navigate the complex facets of their diagnosis and treatments to enable physicians to help them further?
The answer lies in the powerful combination of EHRs with the patient’s own recorded experiences. It is obvious that social media plays a major role in today’s society and there are many social platforms that have changed the way that we form communities. What makes social networking so special is the ability to communicate with people who share similar journeys. This creates a larger worldwide community that can help them to find others to talk to and lean on in a time of need.
For cancer patients, this aspect of community interaction is essentially crucial.
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With the Belong app, access to a cancer-focused social network provides a full range of personal experiences, leveraging data and insights provided by more than 130,000 global cancer patients. Because social media offers patients the ability to speak freely and anonymously, nothing is off-limits – creating a truly open and honest dialogue.
Being able to ask questions, voice concerns and speak without fear of judgment is liberating for the patient, and has the added benefit of providing treating doctors with a better understanding of what cancer patients are thinking and doing in the real world
Access to this information can also help health providers and payers identify patterns for correct drug usage, schedules and related side effects. Equipped with this added insight, physicians become more knowledgeable when advising patients, which eventually leads to better treatments and outcomes.
Social applications hold the key to significant, previously unreported patient data. As more physicians and providers tap into large cancer-specific social communities, this added value positively impacts the entire cancer treatment process.
We can use social app tools to educate patients and their caregivers about what steps to be taking, including diverse treatment protocols and possible side effects and outcomes. At the same time, we can increase their adherence by keeping them informed with regular reminders, reports, measurements and surveys.
Together, the combination of EHRs and social insights will provide an invaluable tool for patients, physicians and the whole health system through the cancer patient’s entire journey.
The writer, the medical director of Belong.Life, is a renowned oncologist with 40 years of experience. He previously served as executive board member of the International Committee of the American Society of Clinical Oncology and was the founder and medical oncology director of the Sandton Oncology Centre in Johannesburg, South Africa.