Categories
Academic Cancer Digital

[FUNDING/RESEARCH/CANCER] Onto Second Round for Social Media Bid with @MacmillanCancer

Macmillan, a cancer charity, seeks to undertake research with impact, keen to invest ‘in research that will deliver long term benefits for people living with cancer’. As someone who has found herself in ‘the cancer world’, and as a digital researcher, I was not surprised to find how helpful Facebook groups (along with other social media, and the occasional foray into an official forum) were in helping source information, especially when appointments with the medical teams are fairly ‘swift’ (although if you have a list of questions they’ll answer them!). From a fairly early point, I started wondering if there was a research question in this, that would help health care professionals understand what information is occurring in those spaces, how these are managed, and how this impacts on the decision making process of patients (and their friends/family).

Around about the time that I was undergoing radiotherapy, Macmillan put out their call for the Research Grants scheme, and this included:

How to most effectively get information about their diagnosis and prognosis to people living with cancer to enable them to make the right decisions about their life, treatment and care: with sub-clause 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.

This was a little earlier than I might have planned to go for funding, and I spent quite a chunk of sick-leave sketching out ideas. Once back in work (Manchester Metropolitan University), there was support from other academics, and the research team, and we put together the short ‘expression of interest bid’, submitting it just after I’d been to see ‘A Space for Sharing‘.

Today, we found out that we are one of only 12% of projects being taken through to the second stage, so I/we have til September to put together the full bid. Lots of learning for me, but I think a lot of support from work to help progress this – we’ll find out if the final bid is successful in February, with a view to having a research assistant in place by summer 2019.

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, and the implications for healthcare professionals

Social media is now a part of everyday life (Lewis, 2018b), with 77% of UK internet users having at least one account, and 91% of those having a Facebook account (Ofcom, 2018). Social media spaces provide a sense of community for individuals in user-constructed networks (Pittman, 2016). Facebook provides both personal space for individuals to connect with their own friends and families, and public-private spaces that allow individuals to network with strangers with shared interests (GlobalWebIndex, 2017). One shared interest group is ‘the coolest club you never want to be part of’: cancer (BBC, 2018), which Lewis became part of in 2017. There are an estimated 2.5 million people living with cancer in the UK (Macmillan, 2017c), and with more living longer (Cancer Research UK, 2015, Macmillan, 2017b), and feeling lonely (Macmillan, 2015), people are looking for support/information online, including through peer-to-peer social network spaces (Bath, 2017, Baucom, 2017, James, 2014, Pietrangelo, 2017).

Lewis (2018a) with 17 years of experience researching the digital environment is a very active member of cancer spaces online. Cancer communities on social media ‘have a lot of information to share with each other’ (Veinot, 2010). With the internet seen as a ‘dangerous place’ by the media (Lewis, 2014a), full of ‘misinformation’ (Macmillan, 2017a), there is a growing drive/need to research the intersection between social media and cancer. Social media is at its heart about relationships and communication (Lewis, 2014b). Campaigns such as #ThisGirlCan have demonstrated that listening to a target community, understanding fears/needs, enables effective communication and informs policy and practice decisions (Kemp, 2016). The activities occurring in social media spaces, both the therapeutic impact gained through the sharing of knowledge and information, and its impact on clinical practice, needs to be understood.

Research Aims: 

The key focus of the project will be upon the nature of online cancer spaces and communities, particularly what and how information is shared within them, and how this interacts with information elsewhere:

  • To understand how people affected by cancer use social media as peer-to-peer networks and communities of practice (Lewis, 2013). Positive and negative aspects, digital literacy, visual culture, and whether people with different forms/stages of cancer use spaces differently will be key.
  • To understand how social media spaces are managed, such as through their structure, and the use of administrators for Facebook groups. This will impact questions of authority and trust online.
  • To understand how the use of social media by people affected by cancer affects their feeling of wellbeing, and impacts on how they participate in clinical decision-making.
  • To understand how health care professionals (HCP) feel about the use of social media and digital information by their patients with cancer, and how or if they transmit their feelings to their patients.
  • To understand how social media works with other forms of information given to patients, including by HCP, cancer charities, and other forms of media.
  • To understand how loved ones use social media with patients, and how this impacts information flow.

The bid then continues to give the methodology of the project (qualitative interviews, larger survey to cross-check, and focus groups to test the recommendations provided). It’s not possible to undertake participant observation within groups, and there’s also a lot of sensitivity re even asking in groups, so there’s a lot of thought has gone into this. Collecting participants is likely to be through The Christie, one of the project partners; other project partners are De Montfort University, and University of Winchester. The second page of the form focused on the anticipated impact of the project.

References: 

There is an extensive further reference list behind this project.

Categories
Academic Digital

Dr Bex Lewis, Blended Learning Fellow, University of Winchester

This is a draft for a (closed) grant application, for a combination of Digital Literacies & Organisational Development!

Dr Bex Lewis has responsibility for embedding digital literacies among academic colleagues at the University of Winchester. She has recently co-led the JISC funded BODGIT project with the ODHE which sought to explore the interface between digital literacy and organizational development. At Winchester, Bex leads the PGCLTHE module on Blended Learning, and has undertaken online skills-focused [1] and accessibility projects [2]. She is on Learning and Teaching, Learning Network (Moodle) and Distance Learning Committees.

Bex has worked as a lecturer in HE for 13 years, experimenting with digital formats, most recently for an innovative Media Studies module specifically built around Web 2.0 tools. Her diverse background as a lecturer in five linked disciplines (History, Media Studies, American Studies, Film Studies, and Design for Digital Media) has helped her to understand the range of responses to technology among colleagues, and to have credibility as an education developer in this exponentially growing field. Her training as a life coach and mentor has equipped her with a set of skills and theoretical tools about change which she brings to promoting digital literacies. Her theory of change stems from an action research model “that for change to be effective it… must be a participative and collaborative process that involves all those concerned.” [3]

In roles beyond the University, Bex is Director of Digital Fingerprint, a social media consultancy that works particularly within the HE and Christian sectors, including digital literacy workshops for the Church of England. She runs The Big Bible Project for the University of Durham, encouraging ‘bigger Bible conversations’, promoting digital literacy amongst Christians, a project extended to a second year because of the value demonstrated. She is an early adopter of social media tools, using them in everyday life since first developing a website for her PhD  [4], giving her an international profile. She has a growing profile as a speaker, including forthcoming European engagements.

Bex has developed a particularly strong Community of Practice through a combination of social media and conference attendance, with connections in both FE and HE. She was on the International Review Board for the Plymouth E-Learning Conference 2011, and presented twice at the Association of Learning Technologists Conference 2011. She is a member of the JISC Learning & Teaching Experts Committee. She has attended a number of JISC workshops, and is a regular super-delegate for its online conferences.

Bex is the Learning with Technology Specialist who will be responsible for the implementation of programme-wide technology enhancements for assessment and feedback on up to 33 programmes as part of the newly funded JISC project, FASTECH.  This will combine her skills as an education technologist with her knowledge and experience of organisational development.

References

[1] SkillsNet: On-line resources, tips and information to boost your academic performance, www.winchester.ac.uk/skillsnet

[2] Jessop, T., Edwards, S. & Lewis, B., ‘Disabled student views on web accessibility’, Capture, Vol. II, (2009) pp50-57

[3] Cheung-Judge, M. & Holbeche, L. Organization Development: A Practitioner’s Guide for OD and HR, London: KoganPage, 2011, p35

[4] ‘Keep Calm and Carry On and other Second World War Posters’, http://ww2poster.co.uk

Categories
History

Radio 3 ‘New Generation Thinkers’ Application

The Funding Award (AHRC/Radio 3)

Do you want to tell the world about your work?

In the last six months BBC Radio 3 has broadcast programmes presented by academics on subjects as varied as 16th century Scottish history, Johnsonian linguistics, Turkish literature and the history of astronomy. Its daily arts and ideas programme Night Waves has provided a platform for debate and commentary from scholars across the world.

Now BBC Radio 3 and the Arts and Humanities Research Council (AHRC) are joining forces to find the next generation of public intellectuals. Together they are launching New Generation Thinkers – a pilot talent scheme for emerging academics with a passion for communicating the excitement of modern scholarship to a wider audience and who have an interest in broader cultural debate.

Up to sixty successful applicants will have a chance to develop their own programme-making ideas with experienced BBC producers and, of these up to ten will become Radio 3’s resident New Generation Thinkers. They will benefit from a unique opportunity to develop their own programme for BBC Radio 3 and a chance to appear on air in special New Generation Thinkers debates and sessions.

The Submission

“Describe how your research could make an engaging and stimulating 45 minute programme for a non-academic audience.” (250 words)

KEEP CALM AND CARRY ON”: it’s a cry that has been heard around the country, and around the world, particularly since November 2008, when the credit crunch really hit, with many using it as a mantra to get through their daily lives.  Catching the mood of the nation it has been widely distributed, copied onto mugs, T shirts and student walls.

What is it about this poster, and other Second World War posters, that continues to appeal to the British public? Is it pure nostalgia, is there something intrinsically British about them, or is it just a case of timing?

As a studio-discussion, the programme would bring in guardians of some of the key archives where posters are held, including Patrick Bogue of Onlsow’s poster auctions, to discuss the questions posed above.

The programme would start with Keep Calm and Carry On: the story of those first posters, their significance, and wartime reactions.

Whilst tracing the interest in wartime posters over the intervening decades, we would discuss how the ‘rediscovery’ of Keep Calm has drawn in new audiences. We would bring in a number of stories of how the message has been subverted and reused to create new meanings in the modern age.

The programme would move on to discuss other campaigns which have been reused in recent years, including Make Do and Mend for both environmental and recessionary concerns, and other potential options to capitalise on the nostalgia, including the ‘Staggered Travel’ campaign to aid our crowded transport systems.

Awardees will know by the end of January, so we’ll see, but with over 1000 people, and not sure that my second half of the application was up to my own standards!