On the Aesthetic Education of Caregivers: Presentation Report from #GM2019 at the Parables of Care blog

This post was originally published on the Parables of Care project blog and the images are hosted there. Copying and pasting here for self-archiving purposes.

The City, University of London and Douglas College, Canada research team collaborating on comics and creativity for healthcare were present at the Graphic Medicine 2019 international conference in Brighton, UK, hosted by the Brighton and Sussex Medical School, 11-13 July 2019.

The title of this fully multidisciplinary conference this year was Queerying Graphic Medicine – Paradigms, Power and Practices.

A full report of the conference is outside the remit of this blog post. However, you can catch up with the conference hashtag on Twitter- to make that easier I created a searchable archive of the #GM2019 tweets here. There’s some excellent photos, sketches, comics, links and information that give a rich collective view of what went on.

Abi Roper (City)  Marie-Pier Caron (Douglas), Ruhina Rana (Douglas), Peter Wilkins (Douglas) and myself (City) presented in a panel in the Paradigms Panel at Room M2 on Friday 12 July 2019, from 4 to 5:30 pm. The title of the session was “On the Aesthetic Education of Caregivers. The Specificities of Form and Genre in Comics about Dementia Care”.

The presentation slides have been deposited on figshare and can be downloaded under a CC-By license as

Priego, E., Wilkins, P., Roper, A., Caron, M., et al. (2019) On the Aesthetic Education of Caregivers. The Specificities of Form and Genre in Comics about Dementia Care. Presentation. [Online]. Available from: doi: https://doi.org/10.6084/m9.figshare.8863448. [Accessed: 16 July 2019].

The audience included health care professionals, academics and artists also working on dementia, aphasia and mental care, with the conversation between audience and presenters extending beyond the Q&A and the session allocated time and offering a valuable networking opportunity to continuing or initiating further collaborations. We were all very grateful for the attentive and engaged audience who attended our session, and for their important questions and feedback.

The team also distributed free copies of both Parables of Care and the INCA Project‘s MakeWrite poetry booklet (in a limited and numbered edition handmade by Abi Roper specially for the conference). This happened both at the panel session itself and throughout the whole conference thanks to the generosity of the Waterstones table (Richard- if you read this, thank you!).

Table at conference panel room
Conference Waterstones table

The Brighton conference was a unique opportunity for the team to work together (for once not mediated by computers nor geographically separated by the 7,573 km distance between Vancouver and London, UK), to get to know each other better and strengthen our research ties. Though Simon Grennan was unfortunately unable to make it due to work commitments, he was in touch with us throughout and before the conference had ended he had already shared with us the proofs for the Parables of Care Spanish translation, which we will release before the end of the Summer. (We missed you, Simon!)

Priego, Roper, Caron, Rana, Wilkins at GM2019
Left to Right: Priego, Roper, Caron, Rana, Wilkins

The conference provided plenty of further evidence that our previous and ongoing work fits within a larger, fully international and multidisciplinary, dynamic and exciting network of individuals and organisations focused on advancing the case for the use of comics and other multimodal storytelling media within healthcare. I think it is fair to say that all of us had the most fantastic, nurturing, fun and thought-provoking time.

Thank you very much to all the GM2019 organisers, as well as all our fellow presenters and attendees, for an incredible conference.

The GM2019 conference organisers announced the Graphic Medicine will return to Toronto next year. See you in Toronto for GM2020 maybe?

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

If you work in a library, hospital, GP practice or care home- or care for someone with dementia in the UK, you can order a free copy of Parables of Care here: in the UK you can request printed copies at no cost here.

Adapting Dementia Care Best Practice Data into Comics: Enhancing Impact Through Graphic Medicine

 Illustration from Wrinkles, a graphic novel by Paco Roca (© Knockabout Comics, 2015)
Illustration from Wrinkles, a graphic novel by Paco Roca (© Knockabout Comics, 2015)

It’s been an incredibly busy year, at work and at home, in professional circles and in the wider public, political arena. As a keen advocate of blogging as a key component of scholarly communications and the research life cycle, I’ve regretted being too busy (or too exhausted) to blog more frequently. As the academic term draws to an end and we approach the Christmas holidays, I feel I have a lot of engagement and dissemination work I have to catch up with. This post is one attempt of doing so.

I am very pleased to share that this year I joined the Centre for Human-Computer Interaction Design (HCID) at City, University of London. The Centre has a strong track record of research into accessible and interactive technologies and methods for people with disabilities and to support creativity in mental health (particularly for dementia care).

My own recent collaborative research has focused on Graphic Medicine, i.e the study, design and delivery of creative, therapeutic and educational uses of graphic narratives (comics, cartoons) for mental health care provision and public engagement.

I am very pleased that my application to obtain internal funding from the School to support activities and strategies to develop impact from HCID’s previous and ongoing research on these areas was successful.  This is a modest internal award to support strategies to enhance the ‘public impact’ of recent academic outputs (2013-2016). Our proposal seeks to connect the dots between previous and ongoing work on dementia care and graphic medicine.

We will be organising knowledge exchange workshops with the participation of HCID researchers, mental health professionals, comics scholars and comics artists. The workshops will focus on the exploration, discussion, reuse and adaptation into comics of the dementia care best practice data collected and made available by the Care’N’Share project, which crowdsourced, curated and aggreagated a significant dataset of case studies of best practices for dementia care (Zachos et al, 2013; Maiden et al, 2016).

Our ongoing study on ‘Graphic Medicine’ as a Mental Health Information Resource engaged with members of the creative industries involved in the creation and publishing of comic books with mental health topics and mental health care students and professionals in partnership with the Tavistock and Portman NHS Foundation Trust (Priego & Farthing 2016, Farthing & Priego, 2016b). The research shows the need of further knowledge exchange between academics, those creating graphic medicine materials, mental health care practitioners and members of the public.

Our proposal seeks to address and respond to these findings through graphic medicine workshops and the creation of deliverables in comics (print and online) form. Initially, we will host comics workshops at City, University of London between late February and April 2017. We will focus primarly in working together to explore and discuss the Care’N’Share dataset and the different possibilities in which the data can be adapted into comics form, leading to the creation, distribution and user testing of a professional comics publication, under the artistic direction of Dr Simon Grennan. We will be sending out public and personalised invitations to participate in the workshops and to provide feedback in early 2017.

The end users will be those interested in dementia care (carers, mental health professionals, patients, relatives, members of the public interested in comics and/or mental health). They will benefit by gaining knowledge about the best practices for dementia care collected and the affordances of graphic medicine to make these practices communicated more widely and distributed in an accessible form.

Carers and people with dementia, care homes and health trusts are logical beneficiaries of enhanced impact of dementia care research, but so is society at large: it is estimated 750,000 people suffer from dementia in the UK alone. It is predicted that by 2051 dementia will affect “a third of the population either as a sufferer, relative or carer” (Zachos et al, 2013; Wimo and Prince, 2010).

Research shows that comics have the potential to have a positive impact on the health and quality of life of people who engage in comics creation (for example by participating in workshops) or reading (publications), contributing to transform attitudes, awareness and behaviour around illness and contributing to create new opportunities for empowerment and more positive behaviour (Cardiff University 2014).

Ours is a small initiative that seeks to make a contribution to enhancing the public impact of the best practice data resulting from research by exploring and embracing the communicative affordances of graphic storytelling in general and graphic medicine in specific. We hope that by enabling stronger links between academia, dementia care practice and comics scholars and practitioners, we will be taking steps in the right direction.

Apart from HCID staff, key partners whose support was essential for this proposal are Professor Neil Maiden (Cass Business School, City, University of London), Dr Simon Grennan, Anthony Farthing from the Tavistock and Portman NHS Foundation Trust, Dr Damon Herd from the Dundee Comics Creative Space and Dr Peter Wilkins and the Psychiatric Nursing Programme at Douglas College in Vancouver, Canada. Our gratitude to all of them. We cannot wait to start working together.

References

Cardiff University (2014). Improving HIV/AIDS education and support in KwaZulu-Natal through comics drawing. REF2014 Impact Case Study. Available from http://impact.ref.ac.uk/CaseStudies/CaseStudy.aspx?Id=3582. Accessed: 14 December 2016.

Zachos, K., Maiden, N., Pitts, K., Jones, S., Turner, I., Rose, M., Pudney, K. & MacManus, J. (2013). A software app to support creativity in dementia care. Paper presented at the 9th ACM Conference on Creativity & Cognition, 17-06-2013 – 20-06-2013, Sydney, Australia. http://openaccess.city.ac.uk/3837/ .

Maiden, N., Schubmann, M., McHugh, M., Lai, A.Y. & Sulley, R. (2016). Evaluating the Impact of a New Interactive Digital Solution for Collecting Care Quality In-formation for Residential Homes. Paper presented at the 30th British Human Computer Interaction Conference, 11-15 Jul 2016, Bournemouth, UK. http://openaccess.city.ac.uk/15127/.

Priego, E. & Farthing, A. (2016). ‘Graphic Medicine’ as a Mental Health Information Resource: Insights from Comics Producers. The Comics Grid: Journal of Comics Scholarship, 6, doi: 10.16995/cg.74  http://openaccess.city.ac.uk/13441/ .This research was presented at the Graphic Medicine Conference 2016, 7-9 July 2016, University of Dundee, UK.

Farthing, A. & Priego, E. (2016). Data from ‘Graphic Medicine’ as a Mental Health Information Resource: Insights from Comics Producers. Journal of Open Health Data, 4(1), e3. doi: 10.5334/ohd.25. http://openaccess.city.ac.uk/15251/ .

Wimo A. & Prince M., 2010, ‘World Alzheimer Report 2010: The Global Economic impact of Dementia. Available from http://www.alz.co.uk/research/worldreport.  Accessed: 14 December 2016.

The Open Library of Humanities One Year On: A Chat with Martin Paul Eve

Open Library of Humanities logo

I‘ve organised a public event at City, University of London as part of the International Open Access Week 2016.

Professor Martin Paul Eve will give a talk titled “A New Model for Open Access: The Open Library of Humanities One Year On” (register here).

Date and Time:  Thursday, 27 October 2016, 18:00 BST.

Location:   124 Goswell Road, Franklin Building, R101  City, University of London EC1V 7DP

Map: http://www.city.ac.uk/visit#259041=1

Martin Paul Eve profile picture

Professor Martin Paul Eve is Chair of Literature, Technology and Publishing at Birkbeck, University of London. Among other things he is the author of Open Access and the Humanities (Cambridge UP, 2014; available OA) and is a co-founder of the Open Library of Humanities. Twitter: @martin_eve.

Five Questions; Five Answers

I asked Martin five brief questions in advance to his talk and he was kind enough to provide five brief answers.

Ernesto Priego: What was the ‘elevator pitch’ for the Open Library of Humanities (OLH)?

Martin Paul Eve: We originally wanted to create something like the Public Library of Science in the humanities disciplines. But we needed an economic model to support open access that didn’t rely on authors paying Article Processing Charges (APCs).

The elevator pitch we made was that there are technical and social issues that have to be addressed in the humanities if Open Access is going to work.

EP: You also have a serious interest in computing…

MPE: Well, I’m not a computer scientist or anything like that, but I do have a background as a professional computer programmer, so I like to keep my hand in there. This is actually very useful for work on open access publishing since I understand both the social challenges in my humanities discipline, but also the technical side of production and platform work.

EP: In two tweet-sized sentences, in which ways are human computer interaction and data science related to the OLH?

MPE: Open data is a broad term that could characterize much of what we do (papers are just “data” after all). HCI is incredibly important when we need to win people over to our platform.

EP: Text and data mining and the humanities: is that a thing?

MEP: There is generally a lack of skills among humanities researchers to do this at scale. Most wouldn’t know how to begin (and couldn’t easily since not enough material is openly accessible). That said, I continue to believe that these techniques will come to be more and more important as the volume of material grows.

EP: Finally, what can we expect from your #oaweek2016 talk at City?

MPE: I’ll talk a bit about the background to OLH, what we did in the first year, and how we are developing various stacks of open-source software to facilitate our future mission.

This event is free but requires registration. Limited number of tickets available. Suggested hashtags: #oaweek2016 #OLHone

This event has been organised by Dr Ernesto Priego for The Centre for HCI Design at City, University of London as part of the International Open Access Week 2016.

This event has been listed on the International Open Access Week 2016 events site: http://openaccessweek.org/events/a-new-model-for-open-access-the-open-library-of-humanities-one