[ACADEMIC] Public Engagement. Workshop 2/3: Community Engagement #ERA1819 with@NCCPE

I am just returning from the second out of three courses on the NCCPE Engage Researchers’ Academy, where academics with a desire to do public engagement well, and share those insights with their colleagues, met together in Bristol for 2 days. We were focusing particularly this session on community engagement, ethical issues, and measuring impact.

We are asked to prepare before the course a couple of inputs, including sharing an ethical research dilemma and an overview of what we’ve been up to (public engagement wise) since the last workshop … I ran later preparing my Pecha Kucha on the train there …

Mini Pecha Kucha: Public Engagement Activity from Bex Lewis

There was no time within the workshop to add me in on top of the others already presenting, so I reworked the information into a poster for a lunchtime session, where 4 of us were available for others to ask more (so I was largely sharing about desire for positive uses of social media, and that a bid has gone into Macmillan to look at social media and cancer):


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Poster sessions as part of lunch #era1819

A post shared by Bex Lewis (@drbexl) on

I also have some notes from the wonderful Emma on other people’s Pecha Kucha’s, and have been promised that I will be sent the notes from the final session, as my body/brain had had it, and I had to head home early.

See the collected tweets from the event (around 110):


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.


There is an extensive further reference list behind this project.


[CANCER] Celebrating Clear Scans + @macmillancancer Digital Nurse #BreastCancer

Tomorrow is 6-weeks post-surgery, time that has gone both fast and slow… Last time I wrote I’d had the pathology returned, and had had scans as to whether the cancer had spread… and had succumbed to a wound infection. Apparently having bone and CT scans are pretty normal, but I hadn’t expected them, so that sounded like pretty bad news! So it was with a lot of nervousness that I went in, to be told that all the scans were clear… but there was no clear picture of the liver, so that required another scan. The constant waiting is very wearing, but unavoidable!

I’m pleased that the antibiotics for the wound infection finished last Friday, as I felt like I was on the deck of a ship … I’ve also had a bit of a rest of body MoT (other than the scans), with dental all clear/filling repaired (as if I have to undergo chemo I can’t have dental work done), and eye health also signed off (new glasses provided through work scheme on order as prescription has changed)…

Scans All Clear

Yesterday I went into the hospital for an ultrasound on the liver, expecting to have to wait til next week for the result – and came out having been told it was clear – with my muffin (which had been rescued from the freezer, as I’d not been able to eat for 6 hours beforehand) serving as a celebratory item:

I’m really happy, but to be honest, also a bit dazed and not quite sure how to celebrate – the tube of Pringles didn’t quite cut it, though the outpouring of celebration on social media has been something pretty special (and Kate’s tweet & it’s responses made me smile)! There is also the fact that although my body is now officially #cancerfree (as there were clear margins from the mastectomy), there is still treatment to come … exactly what is subject to more waiting.

Joining the Optima Trial

Throughout the last couple of months, chemotherapy was the one thing that was signposted as a given, with radiotherapy not sure, and hormone therapy for definite. I have signed up to the Optima Trial (into its third phase, so already pretty solid) – after taking a week to think this over:

Doctors decide who should have chemotherapy by looking at the size of the cancer and checking to see if it has spread to lymph nodes. But some people might not benefit from having chemotherapy. It is possible that they will do as well with just hormone therapy. So doctors are looking for better ways to decide who should and shouldn’t have chemotherapy.

With the trial, 50% will be randomly assigned chemotherapy. The other 50% will have their tumour sent off for testing, on the basis of which chemotherapy may be recommended, or may not be! If I hadn’t signed up for the trial I would have had 18 weeks of chemotherapy, 3 weeks of radiotherapy and hormone therapy for 10 years by default. The trial determines if chemotherapy is required. All treatments have hideous sounding side effects, but chemotherapy the worst … so if there’s a chance of it not being of value, that’s worth the extra 2-4 weeks wait! On reading one of my oncologist’s papers (well, OK, trying to read it) re Oncotype testing – a similar test from the US, it seemed clear that the value was both patient wellbeing (chemo is tough!), and also NHS funding (test is around £2,000, chemo is around £50,000).

Whilst waiting, if I can manage to avoid any further infections, etc., then I’ll keep popping back to see the wonderful nurses in the Bobby Moore Unit, meet the oncologist again on 13th November – and this weekend hopefully attend Premier Digital Conference Conference/Awards (for which I’m a judge) … and then have some time to continue writing!


I’m really excited to see that Macmillan has hired a ‘digital nurse’. As put it:

Macmillan Cancer Support’s digital nurse specialist, Ellen McPake, is solely dedicated to answering questions online to help those affected by cancer online, via social media platforms and the charity’s online community… A growing demand for online information about cancer diagnosis and treatment has prompted the creation of the role. Macmillan is also concerned patients lack the information they need and are instead turning to unverified sites which leaves them frightened and at risk of bogus cures.

I’ve encouraged churches for years to have ‘digital pastors’, or at least take the online as seriously as offline. One of the first things my medical team expressed concern about was that as a ‘digital specialist’ I would fall for all the dodgy information online, but note page 163 of my book, Raising Children in a Digital Age, where I’m talking about pro-mia sites:

Dr Rachel O’Connell, an internet safety expert in this area, notes that many organizations have been reluctant to set up online health sites, so other sites have grown to fill the gap. There is a significant danger that, because many sites are unmoderated, information isn’t monitored, so incorrect answers go unchallenged.

Digital literacy is one of my core interests, and my history degree/PhD emphasises context/content and interrogating sources, I think I’m pretty well equipped (although I guess desperation can cause strange behaviours). It is something I’m interested in looking from a research perspective though – what kind of information do people trust online, and more particularly, the use of online support groups (I’m in 3 very active breast cancer groups, plus a women in academia group, an anti-diet group + other groups, many of which are my first stop for information). There’s plenty there to think about. Tonight, however, sleep is key… and tomorrow I’m getting my nails done!!