Along with an independent oncology communications researcher, and colleagues from Manchester Metropolitan University, The University of Manchester, The University of Salford, and The University of Winchester, and in partnership with The Christie, I have just submitted a substantial second-stage bid to Macmillan in response to the Research Grants call on ‘the role and impact of peer to peer information provision (eg through online forums, social media, face to face) for people living with cancer, and the implications for healthcare professionals.’ The bid overview reads as follows:
The NHS is under pressure, by 2015 there were around 2.5 million people living with and beyond cancer (LwBC) in the UK (Macmillan, 2017c). So, we need to consider alternative means of helping patients receive the support and care they need. There is evidence that patients with cancer are already starting to do this and have developed a ‘community of need’, both seeking and providing support and information online, including through peer-to-peer social network spaces. The internet is now a very ordinary part of our lives and an acceptable means for providing support and dialogue between like-minded people.
This research seeks to provide a clear picture of the use of social media, as peer-to-peer support networks and information sharing spaces, by people affected by cancer. It will draw directly upon the experiences of patients, clinicians, and online administrators to understand the hopes and fears, and the real-life experiences (the good, the bad and the ugly) shared within social media spaces.
The project seeks to understand patients’ own motivations for joining social media peer support spaces, how they found the conversations they participate in, how it feels to be a member, and how the information being shared interacts with the information received elsewhere. From clinicians we want to know what impact social media has upon their clinics and patient decision-making. For administrators we want to appreciate why they volunteer, and how they seek to manage groups as ‘safe spaces’.
The research will be conducted in 4 phases:
Phase 1: A literature review will be undertaken to explore the current state of knowledge around peer support within cancer groups, predominantly those created online through social media.
Phase 2: We will interview patients LwBC, clinicians, and administrators for relevant patient-run Facebook groups (prioritised as these are large, findable, groups, unlike other groups such as WhatsApp) to explore their experiences of using social media to support patients diagnosed with cancer.
Phase 3: We will use data from Phase 2 to help us identify the core areas for focus for a large-scale survey. Through, physically and digitally circulating the survey via hospitals and cancer charities, data will be collected from a much larger group of patients (500+). We aim to engage with patients with cancer of all types, and at different distances from diagnosis, to achieve a greater understanding of how social media has impacted on their cancer journey, identifying gaps.
Phase 4: The information collected from the survey in Phase 4 will be analysed. The insights collected will not only form the basis of academic research articles, but more accessible forms of information, tested through focus groups (2 Patient; 1 HCP), to be shared amongst clinicians and patients LwBC and Macmillan.
The project will result in changes to knowledge, and subsequently behaviour, by users of social media, and those responsible for their clinical care. This will contribute to better understanding of the potential health benefits or limitations of social media, contributing to better health through more critical use of platforms, interactions, and information shared.