Digital solidarity networks for cancer patients and caregivers

As the CancerDisinfo community, we met on February 10th at the event titled “Online Communities: Digital Solidarity Networks for Cancer Patients and Caregivers” on February 10th. In our event, which started with the presentation prepared by Dr. Çağlayan Akpınarlı, we discussed the questions of which gaps online communities fill for cancer patients, caregivers and their relatives and how solidarity networks are established in them.

Together with health communicators, doctors, health journalists, academics, researchers, educators and those interested in the topic, we had a deep discussion in a short time. We briefly summarize the content so that our discussion can reach more people and serve as a basis for future events.

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Here are the highlights of our event:

One of the founding and powerful foundations of online communities is the knowledge gaps of cancer patients.

Online communities are one of the most powerful platforms for cancer patients to access the information they need about suspicion, diagnosis, treatment and post-treatment processes. Patients, caregivers and relatives ask many questions that they cannot ask in short doctor interviews to people who have already had the disease or are currently undergoing treatment. They want to develop an insight into their own disease process, get the seemingly simple information they need during the disease process and feel that they are not alone. Akpınarlı describes this need as follows: “Questions that don’t come up during the examination”.

Cancer patients meet in online communities to know they are not alone and share their feelings

Online communities are not only a place where cancer patients get information, but also a big social space where they feel they are not alone. In the relationships they develop, they break their feelings of loneliness, get inspired by different stories and strengthen their motivation for their treatment process.

Accurate information sharing eases the burden while misinformation increases patients’ anxiety

In addition to the unifying power of the community, it is essential to check that the information shared in the community is accurate. Every content shared is also monitored by the people in the community. Because inaccurate information both increases the anxiety level of patients and can lead them to the wrong thing. The information in this content, which is controlled with common sense, is always open to criticism and questioning. Sharing accurate information based on reliable sources, citing scientific articles if necessary, and explaining the information that patients can use in a way that they can understand is very important to meet the needs of patients.

Solidarity practices are being organized to alleviate inequality in access to health services, from drug lawsuits to sharing unused beds

In online communities, patients are organizing solidarity strategies to alleviate inequalities in access to health services and share the burden of cancer. Solidarity is organized in a way that can respond to all the needs in the treatment process, from unpaid medication costs that patients pay out of their own pockets to sharing unused beds with other patients and those in need. People who have been through the disease process and whose treatment is over share their material, spiritual and intellectual accumulations with others.

People with low levels of education but trained by the disease process can lead communities

People who have been through the disease process, who have been informed, who have witnessed the process of many patients and who have been in the community for a long time are the natural leaders of the communities. With their online time, the number of questions they answer, their ability to guide and problem-solve, they are the natural leaders of the community and, in many cases, its management.

The view of communities as a “market” and cancer patients as “customers” is prevented by community leaders and dynamics

The fact that cancer is seen as a “big market” increases the appetite for online communities. Malicious individuals who want to sell unproven products claiming to be natural and turn the sociability into a market are recognized by natural leaders and the dynamics of the community. The language they use, the way they approach patients and their rash behavior attract attention, and these people are expelled from the community. It is very important for both community leaders and members to develop awareness against malicious people who try to get into the group in different ways. It is not enough to intervene with these people alone; it is always important to be cautious against dangers such as sharing personal data, selling products, and spreading misinformation.

The power of online communities in health communication

Online communities are an important ground for breaking the hierarchy in healthcare and creating an equal relationship. In particular, they organize a practice of solidarity that responds to patients’ search for information, shares their problems, lightens the burden of cancer and saves patients from being a number. In social structures where there is no equal access to health services and there are large gaps, these founding grounds, which are vital for patients, need to increase.

* Çağlayan Akpınarlı has been involved in civil society projects in Turkey and abroad. She has worked in academic and administrative positions in designing communication and marketing projects for local and global brands. His PhD study titled “Community-based Narrative Medicine: Listening to cancer patients’ stories in Facebook groups” , completed in 2023 at Galatasaray University, examined the role of community-based narratives in health communication improvement processes. Her research interests include health communication, narrative medicine, community studies and social impact evaluation.