I have just set up a new Facebook group called ‘Social Media and Cancer ‘Research Project’‘. The current description is:
This group is a private group (can be found by searching, but entries can’t be seen) created in association with a research project in development to investigate social media and cancer. The project wants to understand how and why people are using social media with/affected by cancer, and wants to ‘make the lived experience better’.
In line with a desire to gain meaningful ‘patient and public involvement’ (PPI), this Facebook group is designed to gain insights from those who have been affected by cancer, both in terms of the initial questions we should be asking, the research design, and throughout the project itself. We are interested in all types and stages of cancer, whether you have cancer yourself, or have been affected by friends/family having cancer.
The project will be led by Dr Bex Lewis (Manchester Metropolitan University), who is living with metastatic breast cancer (currently NEAD). We submitted a bid to Macmillan Cancer Research, which was highly commended, but ultimately not funded. Our current plan is to submit a smaller bid to NIHR ‘Research for Patient Benefit’ Competition 41, (likely February 2020), undertaking qualitative interviews into ‘how people are using social media alongside cancer’, leading to a second bid in in order to survey a much larger group, and (online/paper) materials that can help people use social media better, including for psycho-social support and information sharing.
The project has a team that includes academics who have undergone cancer, a research specialist in patient communication (former oncology nurse), qualitative and quantitative staff, and with a particular desire for public engagement/making research relevant. The Christie Hospital will be our NHS partner (so project largely UK focused).
The project team is currently reworking the funding bid that we got to the second stage bidding process for with Macmillan (apparently only 12% of bids got this far). The final bid received a score of 4, with a score of 5 required for the project to be fundable. Feedback from the panel commended the range and expertise of the project team, and the need for the research and the potential impact of the project, and gave some other guidance for improvements. We are currently redeveloping the bid for NIHR ‘Research for Patient Benefit‘, and keen to encourage meaningful PPI (public and patient involvement). We have established that we do not need to undergo the university ethical processes at this stage:
Therefore ethical approval is not needed for the active involvement element of the research (even when people are recruited via the NHS), where people are involved in planning or advising on research, for example helping to develop a protocol, questionnaire or information sheet, being a member of an advisory group or co-applicant. (NIHR Involve)
And therefore keen to get those ‘affected by cancer’ involved in shaping the project to ensure that it provides meaningful patient benefit, drawing upon a range of cancers, age groups, stages of cancer, different ways of using social media, different reasons for using it, different benefits, etc…
My first post for the group is:
- The digital is part of our everyday lived experience, and widely used by cancer patients, but misunderstood and feared by many. We need to understand how/why it is actually being used by patients – for good and for bad. What platforms are they using? What hashtags? What groups are they in? What groups exist? What hashtags enable you to connect with others in a similar situation to you? What advice would you give others engaging online? Why/what kind of things have they engaged with on social media? What has pushed them away from using social media (either stopping, or never having started)?
Often we say that ‘Social media is good because you can know everything, but …. social media is bad… because you can know everything’.
- I have found social media essential for my wellbeing through 2+ years of treatment, including being able to share information ‘once’ via blogs/social media (rather than having that cancer conversation over and over again), and being able to access lots of useful information which there’s no time for in medical consultations, or ‘just in time’ information when I’m wide awake at 3am with some horrible side effect. There is also a lot of fun to be had with a group who gets where you are coming for, and tells you about the extra things you can access – from benefits to ‘Look Good Feel Better’.
- I have been to face-to-face events, which are still beneficial (and often makes ongoing social media conversations with those met more vibrant), but often find others in the group asking questions that I have dealt with months before on social media groups, and I wish more people knew about what was available.
- There are often people joining social media groups months (or later) after diagnosis/treatment and wishing that they’d known about the existence of such groups beforehand.
- I have taken home PILES of paper information from events, many of which have remained unread. The PDF or e-forms of this material are often available online, and are then read as and when relevant. At times the paper material has a place, and we don’t want to leave behind those who still find this valuable.
- Breast cancer is very well catered for in terms of social media groups and online conversations (often via hashtags), and there has been a decent amount of academic research into breast cancer online (largely on online forums, which are managed by organisations, rather than grassroots, which are created by patients). I have questions about how well other cancers are catered for, and if different groups/types have different types of conversations? How are people finding it? How do the members shape it? Where are the gaps in provision? *Bearing in mind that having one type of cancer doesn’t preclude you from having another type of cancer.
- There is lots of dodgy information on the internet, and vulnerable users being targeted (including within groups). How do patients/friends manage that – and within e.g. Facebook groups, how is that managed by moderators/admins (and how does that shape the experience for members, bearing in mind that most admins are likely people who have got involved because of their own cancer experiences)?
- How do we tell people’s stories/experiences better (therefore affecting policy/clinical practice)? *I’m a (communications) historian by training, so people and the social shaping of technology are particular interests of mine.
- How do we help people get past the ‘digital divide’, and increase digital literacy, for patients, friends/family, Healthcare professionals, and policy makers.
What other questions/areas of interest arise from other patients, friends or family?
All images taken from Unsplash