Social media are increasingly being used by cancer patients, especially adolescents and young adults (AYA), to describe and share their odyssey through the disease course and treatment with similar patients, according to an article authored by a group of researchers representing the European Organisation for Treatment and Research of Cancer (EORTC) and published in the July 6, 2019 issue of The Lancet Oncology. Patients say they establish new connections with peers on social media, which also could replace trips to cancer centres for peer and professional psychosocial interaction in some cases.
Both patients and their families reported a preference for using social media for peer support because it was anonymous and was less stigmatising for the patients. Social media was also convenient and provided increased availability for interaction.
Social media may be taken a step further to provide a new tool for patient–caregiver interaction that allows oncologists to learn their patients’ true concerns, wrote Daniel P. Oran and Eric J. Topol on same day in perspectives on digital medicine in The Lancet. They proposed that telemedicine may provide a possible paradigm shift in doctor–patient interaction from in person, face-to-face dialogue, to that of ‘virtualists’ or physicians who interact with patients they may or may not have ever met.
Digital platforms give rise to peer support and anonymous discussion of patient experiences
The EORTC investigators conducted a review of social digital media platforms, which showed that they were a forum for discussion that ranged from sharing clinical information on treatment side-effects, to social benefits or welfare payments. Patients were able to share personal experience and ask questions of their peers and cancer survivors could participate in internet-based back-to-work workshops and online dating services.
Of the two largest media platforms, the US Stupid Cancer and the Israeli Stop Cancer, the authors used Stop Cancer as a vehicle to deliver a web-based survey over the course of five days. Of the 30’000 patients with cancer aged 20 to 45 years in Israel, 20’000 are registered members of Stop Cancer. The user profile of these members was described by the investigators based on information provided by 519 respondents, who were either cancer patients or survivors.
The user profile was comprised primarily (73%) of patients with non-metastatic disease, with the most often diagnosed types being breast cancer in 31% of the respondents, lymphoma in 24%, leukaemia in 10%, and colorectal cancer in 8% of participants. Seventy-five percent of respondents said they used Stop Cancer for both medical and social resources and sought out tools that facilitated emotional coping in both patients and their families. Most (62%) of the responders had higher education and were satisfied with the platform; 94% of patients stated that they would recommend use of the platform to others.
Cancer concerns remain unchanged during the transition from active disease to survivorship
Interestingly, the nature of the results were similar between respondents with active disease and survivors, suggesting that transition into survivorship may be even more challenging than is currently suspected, and that this crucial stage needs more attention from caregivers and support groups.
Amidst the rise in social media participation by younger patients for health information, the AIEOP proposed guidelines for use by healthcare professionals
Recognising the importance of social media to young adults with cancer and anticipating possible complications, the Italian Pediatric Haematology and Oncology Association (AIEOP) formulated a consensus statement regarding the use of the web for health-related information by patients and the provision of such information by healthcare professionals.
They address the issue of the risk of blurring professional boundaries between caregivers and adolescent patients, which can make clinicians cautious about using social media for healthcare communication. Consideration of potential advantages of the use of social media tempered by these cautions led the AIEOP to make recommendations for the use of digital media, which are summarised as follows.
- Remember that social media can make public a personal professional image and that of a whole professional category.
- Remember to use virtual media to sustain, not to replace, real interactions.
- Carefully consider inviting patients or members of their families to be your “friends” on social media and deciding how to answer friend invitations.
- Do not post content incompatible with professional ethics and decorum, or content concerning your private life, political or religious convictions.
- Do not comment on patients or colleagues and avoid sending or uploading information that can make a patient identifiable.
- Ensure that your social media settings safeguard your privacy and that of your “friends”.
- Maintain professional boundaries and be aware that patients, colleagues, institutions and employers can read your messages; do not share or publish information or images exchanged between a health professional and a patient for non-professional purposes, or without the necessary authorisation.
- Ensure that all multidisciplinary team members are aware of the need for caution when using social media, including non-healthcare professionals, such as administrative personnel, educators, and volunteers, whose ethical and deontological rules may be less precisely encoded than those of clinical professionals.
- Check whether you are obliged to report to appropriate authorities any social media content that could negatively affect a patient's or colleague's privacy, well-being and rights.
Specifically, regarding the protection of the patient privacy the consensus opinion urged avoiding accessing patients’ social media profiles without their consent, to carefully consider whether to join discussions, and to refrain from commenting or even clicking “like” regarding content on a patient's personal page, as this may result in unexpected emotional effects. Procedures must be established for posting condolences and reactions to a patient's death, including the right of patients not to be informed if so desired. Specifically, providing details of other patients’ clinical conditions or death is not permitted. Supervision of the use of minors’ photographs of minors was also recommended.
Regarding protection of the healthcare worker's privacy, the consensus statement recommended the use social media pages for patient groups exclusively for their intended purpose, not for posting personal content. Rules for participants should be established and the identity of all participants should be checked.
Digital media is an appealing tool for the globalisation and facilitation of knowledge, especially to the unique population of young patients with cancer. The use of social media by the medical community is a way to be on the same page as patients and to give a human dimension for young adults with cancer.
The AIEOP recommendations are intended as “food for thought,” and represent an initial attempt to help clinicians working in the field of oncology to effectively use social media to connect with patients while avoiding the pitfall of compromising the privacy of either the patient or the healthcare professional.
Ben-Aharon I, Goshen-Lago T, Fontana E, et al. Social networks for young patients with cancer: the time for system agility. Lancet Oncology 20(6):765. doi: 10.1016/S1470-2045(19)30346-8.
Oran DP, Topol EJ. The Rise of the Virtualist. The Lancet 2019; 394(10192):17. DOI:https://doi.org/10.1016/S0140-6736(19)31498-9.
Clerici CA, Quarello P, Bergadano A, et al. “Proper use of social media by health operators in the pediatric oncohematological setting: Consensus statement from the Italian Pediatric Hematology and Oncology Association (AIEOP).” Paediatric Blood and Cancer 2018; 65(5):e26958. https://doi.org/10.1002/pbc.26958.