Mini Pecha Kucha: Public Engagement Activity
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A mini-pecha kucha (10 slides that auto-move forward after 20 seconds) prepared for #ERA1819, second of three workshops, summarising what we've been up to since the last workshop.
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Mini Pecha Kucha: Public Engagement Activity
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Editor's Notes
- In August BBC Breakfast for first time Talking about an initiative for #ScrollFreeSeptember from the Royal Society for Public Health: “Emerging evidence is raising concerns about the potential impact of social media on our mental health and wellbeing. In 2017, our #StatusOfMind report highlighted a range of potential negative effects of social media, including anxiety and depression, negative body image, cyberbullying, poor sleep and FOMO (fear of missing out). By going Scroll Free for a month, you’ll have a chance to reflect on your social media use – what you missed, what you didn’t, and what you got to do and enjoy instead.” As I wrote in my book in 2014, I’m pressuring for use that is mindful/with wisdom, but although the campaign said it was doing this, it also set no (personal) screentime as a gold standard, although there were other options, so Ed & I had quite a look to agree about, but the ‘either-or-ness’ of the way the campaign was marketed was where we (on air anyway) disagreed!
- This image is one that was produced by RSPH for use throughout #ScrollFreeSeptember (https://www.rsph.org.uk/uploads/assets/uploaded/2eb1c497-634f-4b75-a2cc8716796e5a1c.png), and again, you’ll see that it’s very negatively constructed. As with all ‘propaganda’ (which is basically what modern marketing is), it’s seeking to support the campaign that it’s marketing (although it is drawing upon research, it’s largely correlation, rather than causation). Professor Sonia Livingstone is my go-to for the latest content on screentime, as, with research drawing upon at least 25,000 children, their research-supported findings are much less ‘panic-stricken’: one-size-fits-all’ solutions don’t work when they are taken too literally; they don’t allow for the diverse conditions of real people’s lives. http://blogs.lse.ac.uk/parenting4digitalfuture/2018/02/28/why-the-very-idea-of-screen-time-is-muddled-and-misguided/. With government calls to both treat screentime like junkfood, and to increase screentime so children can ‘save the country’ through increased digital literacy, there’s confusion for parents in particular (which this headline given to my article designed to be positive in the Telegraph doesn’t help!)… Most sensible research now focuses upon the quality of what happens on screens, rather than the quantity, although many discussions haven’t yet caught up, as otherwise parents/carers end up looking at the clock rather than their children. The government is pulling together research for a Commons committee looking at screentime, and what legislation should be undertaken, and I had a submission accepted for this: http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/science-and-technology-committee/social-media-and-mental-health/written/81107.html
- As you know, I have spent most of the last academic year dealing with cancer, and I used social media extensively throughout. I broke the news of the diagnosis thorough Facebook, then Twitter, then Instagram, and then blogged about it. I wanted to find a way in which to share what was going on with many people at once, and as I am embedded in social media culture, this was an obvious place to share ‘the good, the bad, and the ugly’ of cancer treatment, and also a place to connect with others going through similar experiences. I finished hospital-based treatment at the end of May, by which time I’d moved a lot towards using Instagram for my own news, and we captured the moment of ringing the ‘end of treatment bell’ (treatment had been ongoing since end of August), and took the opportunity to give my other book (published 2017) another bit of a highlight with a customised t-shirt! In June I spoke at a couple of events about workplace use of social media, and talked about how my social media accounts include personal and professional content (and the importance of positive work policies), which led to this article (again, the heading with the focus on ‘fight’ is not one I’d choose). Icons: https://www.freepik.com/free-vector/abstract-social-media-icons-set_2607301.htm http://www.businesscloud.co.uk/news/how-facebook-helped-my-cancer-fight
- I joined a number of Facebook groups first off, recommended by friends (there’s some really dodgy ones on there), and observed that overall, content in the groups is very much about people sharing the worst experiences (therefore leading to stress and worry re symptoms, recurrence and death), and the best experiences/information (therefore allowing access to information that medical teams just don’t have time for in a 10 minute appointment) – though this is not so very different from face-to-face. The three main groups that I use are Younger Breast Cancer Network who say that we are #InYourPocket 24/7, only under 45s at time of diagnosis can join, no links/stats except in the research group, sub-groups for fertility/finished hospital treatment/recurrence/secondaries groups – all moderated by ‘Edna’. UK Breast Cancer Sufferers & Survivors – all ages – also have to go through process to join – people share all kinds of random stuff but the group self-regulates well. BRiC is a group set up by Naz who researches cancer and resilience, so any data on there may be used by her research… these are just a handful of the breast cancer only groups, and we haven’t even mentioned Twitter/Instagram hashtags yet!
- My surgeon, and other medics that I engaged with, are fearful of people going online, and the kind of data that people interact with. In another small group – Women Academics LwBC, I connected with 3 other women with breast cancer – had used it v differently (one was not ‘Facebook out’, but all felt there was something to be researched here. Breast cancer is very well accommodated, but with other friends who’ve not been able to find anything for their particular cancer … what is the situation like for others with cancer, across different demographics and psychographics? Before last one of these had submitted a 2-page expression of interest to undertake research for Macmillan “Living with and beyond cancer in a digital age: the role and impact of peer to peer information provision via social media, for people living with and beyond cancer (LwBC), and the implications for healthcare professionals” (1 out of the 2 pages was to focus on Impact, and with £200k at stake… I want to know it’s going to make a difference to policy, practice and quality of life ). This bid has now gone to second stage.
- Digital culture, social media, health communication, communities of need, and peer-to-peer networks of support have established research histories, although research into social media has typically been restricted to specific social media platforms or types of cancer. Online forums provided by charities have been researched extensively, but large-scale grassroots social media use are under researched. Much of this has been done through observation, rather than asking patients living with and beyond cancer (LwBC) about their perceptions and practice of use. This project will enable us to capture deep insights from both active and limited users, and also certain gatekeepers of information. First stage: literature review, combined with interviews with 32 people with the four most common types of cancer: breast, prostate, lung and bowel to establish the key themes around good/poor uses of social media (using grounded theory)…
- At that stage we’ll also have interviewed 10 health care professionals (oncologists, surgeons, etc.), and five Facebook admins (one from each type, 2 different types of breast cancer groups). We’ll use the interviews to establish the survey questions, to be sent out to all kinds of cancer, reaching at least 500 participants, to see if we can to get more of an umbrella view – were the findings from the interviews more established across a wider experience group, what is the real experience, what is good practice, and where are the gaps… What could people really do with knowing before they start engaging about cancer on social media…
- We’ll then bring together the data from the different participants, and turn it into ‘advice’ to be shared amongst patients and health care professionals. We’ll do this through focus groups (which I’ve done previously re Manchester City Football Club and their Chinese marketing), 2 x 7 patients and 1 x 7 HCPs, as we seek to establish what information needs to be shared (bearing in mind that I’m a very established user, so what do those with more needs, need, and in what format… we’ve indicated a brochure – as there is already an established system for these, but as it’s a digital project, maybe it needs something different … as is the way that the NHS is going currently. Important thing is to understand the audience and produce appropriate content.
- We are contributing to the empowerment of the individual outcomes, in that people affected by cancer: feel in greater control of their life, treatment and care; have better access to clear, relevant and timely information; have more helpful, better informed conversations with those who treat and care for them So, thinking about the impact outcomes (as you can hopefully see – project has been co-designed): Working with one of the leading cancer hospitals and a large cancer charity for wide reach. Media work and academic publications to share findings, with a blog throughout to show work in progress/share anecdotal content (digital metrics) Influencing policy at local/national level Influencing the capacity of patients to make the right choices Enabling and facilitating future cancer research (longer term bigger projects)
- So, back to the #ScrollFreeSeptember, I’m keen to demonstrate that social media can be used positively (and that we can sometimes start the conversation with use it more/use it well, rather than don’t use it/restrict it (as someone who has dealt with disordered eating, dieting causes the same problems, so why we’re using that as a model half the time… Seeking to participate in national conversations, so good to get this tweet – asking for involvement… cancer in some ways is a specific case study, as church communities have been in some of my other research, but seeking to see who else can bring on board for one woman’s aim for change! https://twitter.com/DuncanStephens9/status/1046381179052740608