Author: Joan Alaboson, Doctoral Researcher, ADVANCE CRT, Department of Psychology & ALL Institute member, Maynooth University.
Everyone has that one neighbour, friend, or family member who has the latest scoop and advice on everything, but who never authenticates their claims. One may do everything to avoid them, but fail repeatedly because it might be unreasonable to change residence, work or school for this reason. And, yes, exiting the WhatsApp family group might trigger unnecessary conflict.
Beyond social contacts, we rely on regulatory frameworks and professional codes guiding more formal news or information released through various media. Regulators ensure verifiable sources, ethical considerations, and penalties when breach of trust is proven. Nevertheless, information verification is becoming increasingly difficult, particularly on social media, such as when an unknown person claims ‘lived experiences’ and provides apparent proof, leading to potentially dangerous and misleading communications.
The fact that chronic illness pretenders, who reached out to the public in their lie, have been caught out, only highlights this problem. In 2013, Belle Gibson claimed to be cured of terminal brain cancer by a regimen of healthy eating and other treatments, which she shared with her audience on social media. But all of it was false. While the monetary consequence of that deception has been detailed, little or no effort has been made to explore the deception’s health or psychological consequences on followers. Closer to home, in 2025, DJ Carey, a well-known former hurling player, was caught in a false cancer claim that he attempted to support with a convincing photograph to corner the unsuspecting public. Overall, it can be difficult to verify or authenticate personal claims, particularly when it comes to health.
According to the World Health Organisation, misinformation and disinformation are distinguished respectively as the spread of inaccurate information, with no malicious intent in the case of misinformation; or with malign purpose in relation to disinformation, such as in the above examples. This distinction is important in light of the role that peers, who are others with shared lived or situational experiences, can play in supporting those in similar health circumstances. Peers can share their experiences accessing services, information about the illness and its outlook, support emotional wellbeing with positivity and encouragement, or offer practical support, which are relevant to people at all stages of an illness. Growing research shows that peer support in chronic illnesses such as cancer and multiple sclerosis (MS) is needed and valuable, but can be threatened by misinformation and disinformation.
From a bird’s eye perspective, peers and peer support are valuable, but often ignored within the health system. Their impact is largely complementary to the services delivered by healthcare workers, as one of the six components of health systems. Amongst other responsibilities, health workers provide, and highlight, preventative information and advice to encourage their clients or patients to optimise their health. This may bring an added benefit, as clients reflect on their biomedical, physical, and or psychological progress, parallel to their adoption of these changes. However, this is not always the case with consultation time constraints and varying experiences interacting with health workers. For instance, Mehraban and Colleagues (2023), exploring the lived experiences of people with MS receiving a diagnosis, report varying health worker abilities to communicate empathetically and build trust with their clients. Even in our recent interviews with 28 people living with MS between 1 and 38 years, one participant reflected on their unsatisfactory experience at diagnosis.
I was actually… given my diagnosis by the secretary… she said no, if you go in there and he says you got MS, you’re not to worry because you know it will be good and everything will be fine, you know?… Like she’d let the cat out of the bag. But she was a lot more sympathetic and empathetic than the neurologist.
It is gaps like these that peers often fill with information, instrumental, and emotional support. They can respond to personal needs, potentially acceptably.
Increasing support and visibility of authoritative voices, and fact-checking surveillance, might be effective ways to connect people needing peer support to authentic peers and to mitigate potential disinformation. Patient advocacy and support organisations, such as MS Ireland and the Irish Cancer Society, have a remit to meet needs in the cohort they serve. For example, Maguire and Colleagues (2023) have shown that MS Ireland community health workers and broader services connect people with one another and provide opportunities to share experiences. However, these organisations are not only in need of more funding to enable wider reach to potential patients and their families through their preferred engagement formats, but also require better integration in the health system. In the previously mentioned interview study, with people living with MS, we found that many individuals lacked knowledge of MS Ireland and its available supports, sometimes years into their diagnosis. An alternative, and albeit Herculean approach, might be regular surveillance of social media and fact-checking health updates. In news and politics, several organisations dedicate resources to fact-checking statistics and speeches, to ensure public trust. Surely, such consideration can also extend to health.
Overall, more efforts to connect patients to verified organisations or support groups at the interaction and engagement levels with the health system are needed. If contact with authoritative voices and health fact-checking is promoted, there is a chance that disinformation campaigns will be easily spotted and drowned out. But this outcome is aspirational. Robust evaluation of these strategies is required, now more than ever.
Acknowledgment: Many thanks to my PhD Supervisors, Drs Rebecca Maguire & Laura Coffey , and ADVANCE CRT.
