An exploration of the value of computer-based virtual environments in the management of visible disfigurement

avatar face with disfigurementSummary

We asked three participants to inhabit an avatar in Second Life, first without and then with an overlay mimicking a facial burn. We reviewed comments about the virtual world, the impact of the scar, and responses to facial disfigurement questionnaires.

First published by Ether Books, October 2013.


Second Life

We used Second Life (SL), a widely accessible online virtual environment (VE) (Au, 2008), the utility of which has been described elsewhere (Hall, Conboy-Hill, and Taylor 2011). The validity of VEs to model human behaviour is underpinned by extensive research by Bailenson and his team (see  Blascovich & Bailenson, 2011). We felt the environment would be suitable for this study because it would balance field versus laboratory (control v realism) issues, and eliminate the need to recruit people with facial disfigurement (FD) or ask participants to wear a prosthetic.



‘Presence’ is an important VE concept reflecting a user’s sense of being in a VE. The Proteus Effect (Yee & Bailenson, 2007) is a phenomenon whereby changes to a user’s avatar impacts on both in-world and real life behaviours. This impact is described as transformational and underpins much of the theoretical and empirical structures informing VE research. For VEs to be effective as a clinical or research tools, ‘presence’ and transformational capability seem essential.




The experience of disfigurement is generally negative, and so people tend to avoid social situations (Kent 2000). Hence, there is likely to be a demand for interventions and support online for socially or geographically isolated people but FaceIT, (Bessell, Clarke, Harcourt, Moss & Rumsey, 2010) is the only one currently available.

Virtual reality is increasingly being used for a variety of other psychological difficulties (Parsons & Mitchell 2002; Parsons, Leonard & Mitchell 2006; Price and Anderson 2006; Inan 2008). This study is a small scale exploration of the feasibility of a VE for FD research and support.



In a case study design, we asked three people without FD to use SL with a facial burn attached to their avatar. We explored a priori themes via semi-structured interviews based on existing research on VE immersion and disfigurement. These were:

  • Identification with the avatar and SL ‘presence’ prior to the FD being attached.
  • Participants’ reactions to the change to their avatar’s face
  • Social interactions in SL before and after the FD is attached.




The three participants (2 male: P1 & P3; 1 female: P2) were aged 22-23, and had no visible disfigurement in real life. Two were Sussex University students, whilst the third was in full time employment. They were paid £15 on completion of two separate one hour sessions.



The latest version of Second Life Viewer was installed on a desktop computer that had a broadband internet connection and an ATI Radeon HD 4800 graphics card installed. There was an on-screen inventory that permitted a guided exploration of options available to participants in SL. The sessions where the FD was attached began in a VE area that was sparsely populated.


We used a generic, customisable avatar that could appear as either gender, and dressed it in the wardrobe described by SL as ‘student’. It was labelled ‘RD1’.


The FD was a bitmap representing a radiation burn which earlier feedback had suggested was realistic. It could be applied easily by the researcher (Corrie Neilson – CN) by clicking on it in the avatar’s inventory.


Interviews were recorded on a digital voice recorder, and notes made as a contemporaneous record of people’s responses. After the second session, we asked participants to complete a Body Image Coping Strategies Inventory (BICSI – Cash 2005) which measures cognitive and behavioural coping strategies adopted by people to deal with body image challenges.



These were the 29 items of the BICSI. They identify three main coping styles: appearance fixing, positive personal acceptance, and avoidance. We adapted the wording to reflect the hypothetical nature of the questions so that “what do you do?” became “what would you do?”.



The sessions were designed to facilitate open discussion in a semi-structured context. Prior to each first session, we modified the gender of the avatar to mirror that of the participant, although they could change this if they wished.


Session One

The main focus of this session was familiarisation with SL. Participants could explore the VE with guidance (CN), e.g. editing the look of their avatar and navigating the interface. During this session, participants were asked about their impressions of SL through an ongoing semi-structured interview.


Session Two

Where possible, we edited each avatar to look as it had at the end of each participant’s first session. If the interval between sessions exceeded two days, we gave people a little time to re-acquaint themselves with SL.


Once re-familiarised, participants left the room while we attached the FD. They had not been aware that a disfiguring scar would be attached and so now saw it for the first time. We said they could remove the burn if they wished, and explored participants’ reactions to the disfigurement over the remaining hour. They completed the BICSI at the end of the session and left after debriefing.



The interviews were transcribed verbatim, and analysed by two separate researchers, using Pope, Ziebland & Mays (2000) method of Framework Analysis. Focus was on the content in accordance with the previously identified a priori themes.


Identification with the avatar and ‘presence’

The experience of the virtual environment differed for each participant. P1 and P3’s perceptions of their real life identity influenced their avatar editing choices. P1 wanted to create an avatar that mirrored his real life look, spending twenty minutes choosing an outfit that he “might realistically wear”, and adjusting the hair to mirror his own. He joked about how “picky” he was being, but continued to adjust the appearance before he was happy to use SL for anything else. He then gave his own name to the modified avatar, and addressed it by that name throughout session one. When asked about his choices, P1 said that he would feel more “comfortable and honest” with an avatar that looked like him. Following this, P1’s immersion within the virtual environment was apparent when RD1 was left momentarily naked in front of others. He responded with embarrassment and announced “This has new player written all over it”.


In contrast, P3 removed all traces of an appearance that might reflect his own – “I hate things that look like me”. He concluded that the modified avatar was “who I wanna be”. P3 edited the face by attaching a beard but kept the everything else as before. On observation, the modified avatar seemed to look like P3, plus the beard.


P2 spent least time modifying the avatar. She kept the shape and facial features, but changed the outfit. Her first comment  was that “she doesn’t look like a student”, referring to the outfit provided by SL. She then spent time changing the clothes to ones she said she “wouldn’t wear in real life” but she felt “alright” about. She made frequent remarks about how “fake” the VE felt.


Social Interactions and other avatars

Participants responded differently to SL’s social opportunities. P1 was relatively at ease, engaging in local and private chat with other avatars. He was confident in his ability to be socially attractive to other residents, and commented about getting “a second life girlfriend”.


P2 and P3 were less confident and approached social interactions by reading ongoing public chats amongst the other SL residents, P2 commenting that “they say stupid things”. She questioned whether people form friendships in-world and talk about “controversial issues…like politics”. She observed others but did not initiate any conversations.


P3 did initiate conversations, but spent time choosing the most appropriate avatar with whom to engage, basing suitability on screen name and overall appearance. P3 seemed anxious in-world and uncertain in his real life behaviours. He said that if there was no response from people he approached in-world, he would feel “rejected”. He demonstrated this by walking his avatar into the sea when he “couldn’t handle” an ongoing conversation.


All three participants wanted to authenticate the identity of the other SL residents, and both P1 and P3 commented on their assumptions about the real life identity of “sexy” (P1) or “scantily clad” (P3) female avatars. They were both adamant that these avatars were likely owned, in real life, by a “bloke” (P1) or “some weird guy” (P3). They also both said that those avatars who appeared “normal” (P1) were more likely to reflect the look of the corresponding user. P2 reserved judgement and reflected instead on whether other avatars were controlled by “real people”.


Reaction to the FD

All three participants agreed to use SL with the FD attached to their avatar. Both P1 and P3 said that, knowing they could remove it lessened any social anxieties they might have felt. P1 commented that he was “using [RD1] for the sake of an experiment” and would not “choose” to put the burn on his own avatar. P3 similarly commented that “these characters can be changed and that’s the key point for me”. P2 on the other hand, showed little response to the scar because “it’s not me”, and so a facial scar in SL “wouldn’t really matter”. This reflected her behaviours in session one, in which she spent least time modifying the avatar, and said she felt the environment was “fake”.


All three participants now identified less with the avatar they were using. Both P1 and P3 distanced themselves from any previous ownership; P1 referred to the avatar as “RD1”, rather than his own name and also said that “…yesterday I saw him as being this kind of smart cool guy, whereas now I feel sorry for him”. Similarly, in response to seeing the scar again, P3 laughed saying “I’ll admit I kind of want to take it off”. However, none of the participants did actually ask to remove the scar.


The participants’ social behaviours in-world with the FD did not differ from their first session. P1 continued to engage in the social element of SL to “see how my new face reacts”. His behaviours though, seemed confrontational and an attempt to get a reaction from other residents – “I just want someone to proactively ask me about it” – and he was disappointed when this did not occur. As a result, he asked people whether they noticed anything “wrong” with his appearance. He received friendly comments that the look was original. Both P2 and P3 avoided social interactions for the same reasons as before, saying they had nothing to talk about.


Results of the BICSI

The three participants identified different real life coping behaviours they felt they would adopt.  P1 predicted he would follow a positive rational acceptance style (mean score 1.81) if living with disfigurement. Whereas P2 speculated that she would adopt an appearance fixing approach (mean score 1.9) and P3 would adopt more avoidant coping behaviours (mean score 2.13). These were not consistent with the behaviours they adopted in-world when using the disfigured avatar, as no participant removed the scar or tried to fix the avatar’s appearance once the scar was attached.



‘Presence’ without FD

Evidence of virtual presence prior to attaching the facial scar was apparent in the social and appearance adjusting behaviours of the participants. All modified  RD1 early in the initial session to illustrate their personal preferences. For one, this included claiming ownership by giving the avatar his own name.


At times, each participant showed emotional investment in the social content of the virtual environment. Specifically, feelings of rejection, embarrassment or social anxiety were reported by all, which resulted in one participant avoiding any virtual conversations. P2, whilst ostensibly maintaining a social distance, was nevertheless concerned about what her avatar ‘felt’ or ‘wanted’.


‘Presence’ with FD

Following the attachment of the FD, two participants re-defined their virtual identity and used the on-screen name for the avatar. This distancing seemed to highlight their changed perceptions, and led one participant to adopt a more confrontational stance towards other SL residents.


The behaviour of one participant in particular seemed avoidant following the attachment of the FD. He referred to the avatar as RD1, whereas previously he had given it his own name. Two participants expressed sympathy for the avatar, where they had previously felt a sense of personal affinity. This reflects earlier research detailing avoidant coping behaviours of people with visible disfigurement (Kent 2000).


Transformational potential

We found differences among the coping styles identified by participants’ responses on the BICSI and their behaviours in-world. One participant’s scores favoured appearance fixing behaviours, and yet these behaviours were not demonstrated in-world. The two participants who said they would not attach such a feature out of choice, did not identify appearance fixing as their preferred coping. The discrepancies between the BICSI scores and behaviours in-world suggest future research directions evaluating the longstanding problem of divergent expressed and reported attitudes (e.g. Gahagan, 1980).



We explored the use of SL for FD research, looking for evidence of ‘presence’ in the VE to support validity of experience. We believe this was demonstrated sufficiently to justify further focus on VEs for clinical research. There was also indication of inconsistency between attitudes expressed and corresponding behaviours, which promises better clinical evaluation of this confounding factor in effecting change.



Au, W. J. (2008). Notes from the new world: The making of second life. New York, NY:  Harper Collins Publishers, pp IX – X and 252.  

Bessell, A., Clarke, A., Harcourt, D., Moss, T. P. & Rumsey, N. (2010). Incorporating user perspectives in the design of an online intervention tool for people with visible differences: Face IT.  Behavioural and Cognitive Psychotherapy, 38, 577-596.

Blascovich, J. & Bailenson, J .(2011). Avatars, eternal life, new worlds and the dawn of the virtual revolution: Infinite reality. New York, NY: HarperCollins Publishers, pp 102- 115.

Cash, T. F. (2005). Manual for the body image coping strategies inventory, purchased from  (29/10/2010 at 16.17).

Gahagan, D. (1980). Attitudes. In: Radford, J. and Govier, E. A Textbook of Psychology, Ch 27. Sheldon Press.

Hall, V., Conboy-Hill, S. & Taylor, D (2011). Using virtual reality to provide health care information to people with learning disabilities: acceptability, usability, & potential utility The Journal of Medical Internet Research, 13 (4) e109.

Inan, F. (2008). Virtual reality and social phobia: Recreating a social situation in virtual reality. Unpublished Masters, Delft University of Technology.

Kent, G. (2000). Understanding experiences of people with disfigurement: An integration of four models of social and psychological functioning. Psychology, Health and Medicine, 5, 117-129.

Parsons, S. & Mitchell, P. (2002). The potential of virtual reality in social skills training for people with autistic spectrum disorders. Journal of Intellectual Disability Research, 46, 430-443.

Parsons, S., Leonard, A. & Mitchell, P. (2006). Virtual environments for social skills training: Comments from two adolescents with autistic spectrum disorder. Computers & Education, 47, 186-206.

Pope, C., Ziebland, S. & Mays, N. (2000). Qualitative research in healthcare: Analysing qualitative data. British Medical Journal, 320, 114-116.

Price, M. & Anderson, P. (2006). The role of presence in virtual reality exposure therapy. Journal of Anxiety Disorders, 21, 742-751.

Yee, N. & Bailenson, J. (2007). The Proteus effect: The effect of transformed self-representation on behaviour. Human Communication Research, 33, 271-290.


2499 words


This work was completed as part of the first author’s MSc in Foundations of Clinical Psychology and Mental Health with the university of Sussex. We would like to thank Dr Kate Cavanagh for her support throughout.



Corrie Neilson: 33 Handsworth Avenue, London. Email:

Suzanne Conboy-Hill: Consultant Psychologist, Sussex Partnership NHS Foundation Trust, & Visiting Clinical Research Fellow, University of Brighton.


Facial Disfigurement: a study using the virtual world, Second Life

Facial scar on avatar

We found differences among the coping styles identified by participants’ responses on the BICSI and their behaviours in-world. … The discrepancies between the BICSI scores and behaviours in-world suggest future research directions evaluating the longstanding problem of divergent expressed and reported attitudes.


This is a first for Ether Books: ‘Facial Disfigurement in Second Life‘ is a research paper detailing a study in which participants responded to the application of a facial scar to their avatar. A free download for smartphones.


Wired reality: living in a networked world

English: The new Checkland Building on the Fal...


This is the inaugural lecture given by Professor Gillian Youngs, Brighton university. No flashing gadgetry, just a thoughtful analysis of how digitalisation has shifted us towards horizontal modes of communication and away from top down vertical ones. What this means for the ways organisations have traditionally worked – Gillian talks about universities but we are, in the UK, currently confronted by some critical issues in our health service – is a change of focus that allows for more collaborative cross-border working. For an industrial and commercial ethos that favours boundaried, competitive, intellectual silos, this is likely to be difficult. For those that need to share and open up to their consumer communities, it may be their salvation.

And as for us, the individual users of networked worlds? We need to think beyond the screen about our data, who has it, what we want them to have, and how to manage it. Our world is massively digital and connected, and it’s just the beginning of the Internet of Everything.






Good Question

GQ logoGood Question is a technique that supports professionals in assessing people for decisional capacity, in line with the UK Mental Capacity Act (2005) and the US framework for legal capacity. The website is not fully stocked yet but if you Google it, it will do its best to say hello. There’s work in progress to put prompts on an app for your Smartphone too – how handy is that? More as it bubbles to the surface.

So long, and thanks for …

student nursesWell, you know the rest. October 12th is a watershed date: my last as a paid NHS employee, and my first as a pensioner/student with aspirations to hang out in cafes, writing and wearing odd-looking hats. I have projects to finish – an online training package for capacity interviewing, and a working virtual clinical area for researchers, clinicians, and service users – so I have honorary contracts in place to keep professional links with Sussex Partnership & Brighton university. About the same time, it’s back to school with a new satchel and pencil case, on the tail of an MA in Creative Writing with Lancaster university, hence the need for hats. If you fancy a look at some short stories, the links are here on my other blog.

I joined the NHS in September 1971 as a student nurse, worried that being left handed and not having maths ‘O’ level would make it difficult for me to function in the role. All I knew about nursing came from Emergency Ward 10 where regulation was everything, and the Carry On films where it clearly wasn’t. Although both illustrated perfectly the state of the art with its formidable ward Sisters, cowering staff nurses, scuttling students, and on-tap doctor-totty. I chose my training hospital carefully. I looked at Barts, the London, Guys, and turned them all down in favour of their out of town poor relation, the North Middlesex. Why? Superior reputation? Close to theatres (artsy ones, not operating ones)? No, it was because the others sent me a list of items to bring with me, the most intrusive of which, to my mind, was the four pairs of navy blue knickers.

Brighton college of art rag week 1967Quite apart from the fact that my knicker colour of choice would have been bottle green (school colours, obviously), this was not school and I was not eighteen. In fact, I was so not eighteen that I had already been inducted into adulthood through spending a year at Brighton college of Art (in 1967 when it was possible to see diamonds in Lucy’s sky by inhaling even if you didn’t smoke), finding myself abandoned to the streets when Yorkshire council withdrew its out of county student grants, and working in a factory designing hot water bottle covers one week and packaging for Mary Quant cosmetics the next. That was followed by a couple of years working for a Leeds company that leased gaming machines to pubs and clubs, designing the interiors of some of the first pub discos in the UK, and trotting around the country (and occasionally off to what we referred to in awed tones as The Continent) at the behest of a boss whose idea of professional development was what you might call physical. I was not interested in having a loco parentis, the North Midd was not interested in being one to the point of regulating my underwear, and so I was interested in the North Midd.

I survived. Better, so did the hospital and a fair number of its patients, although back then critical injuries and a whole range of diseases meant fewer admissions got to be happy discharges and most of us saw more dying than we might have anticipated. I don’t imagine the numbers have changed much, but the bar has been raised. People we could not save are more likely to go home now, but the severities and activity levels demanded have taken up the slack. We sat with patients, fed them, spent hours in the toilets with them while they ejected foul material from both ends, washed their hair after dismantling the end of the bed, lifted them off the floor when they fell, and hauled them up and over in their beds without hoists because there were none. An elderly patient collapsed while I was getting him out of bed and took one of my lumbar discs with him.

I delivered two babies, started a students’ union, learned how to apply bandages and to tuck in sheets so they didn’t wrinkle. I worked nights for three months at a time and discovered that going shopping after a shift was unwise, unless coming home with a pair of boots a size too big instead of the washing powder you went out for counts as a plus. We resurrected the hospital pantomime and very nearly killed the Matron with one of the lights. We were visited by the Radio One Road Show with Ed (Stewpot) Stewart who managed to deliver a decent programme despite being confronted by serried ranks of Assistant Matrons in navy blue frocks and starched bosoms instead of the roomful of bopping nurses he might have expected. There was an exhibition of nursing and my artist’s credentials were unearthed so that I was asked to paint the setting for the ‘Sarah Gamp‘ midwifery display. I was given afternoons off and delivered rats in a fireplace and rags on a stool. I discovered intensive care.

I also discovered psychology. The first time was during a ward evaluation when the observation was made that I seemed to understand ‘the suicides and the head injuries’. What that meant and why the two would be bundled, I never figured out but perhaps it was something to do with both being initially unconscious and so hard to relate to. Not advising the suicides to ‘do a better job of it next time’ might have been another factor. People were cruel. The next time came as I was shoved into a side ward where the post-op patient being ‘specialed’ was flinging drip poles around and yelling that the anaesthetist was wearing red knickers. ‘Use a bit of psychology,’ said the nurse hi-tailing it off the scene. I thought I’d better find out what that was.

That discovery took me off, post qualification, in unanticipated directions: a few months on the fast-track RMN course at Guys which turned out not to be so fast if you got flu or did a midwifery rather than a psychiatry secondment; then by some miracle, a place at Goldsmiths’ College on the psychology degree course. I wore platform shoes to the interview (it was 1973) and confidently ticked the box about designing experiments because, well – I’d been to art college, hadn’t I? I still didn’t have any mathematical competence to speak of so, not surprisingly, the nuts and bolts of statistics gave me grief. It turned out that having a grasp of the shape of the data worked well enough, but I still have nightmares about the seven hour final exam. Yes, seven hours. Really. Of course Finals, threatening as they are to one’s projected self esteem, come nurses in ICUas a bit of a relief when all you have to give up in order to apply yourself to the revision is night duty in an intensive care unit where people got flown in from the desert (one of these tried to buy me from the anaesthetist for two camels; he argued for five) and new open heart surgery procedures deposited nests of tubes with a fragile human being in the middle onto uncurtained beds in a unit that scared the hell out of everyone who didn’t work there. I ran that unit some nights. One day I’ll tell you about the missing haggis.

Kings gave me professional refuge for another few years while I began to establish a toe-hold in a new discipline when, finally, nights in ICU to keep a flat, a cat, and a thread of a social life going through a full-time PhD, gave way to teaching evening classes and undergraduate tutorials through an equally impecunious Master’s in clinical psychology. University College couldn’t have been more different from Goldsmiths’, and the Institute of Psychiatry could hardly have been more alien to both. The NHS was my thread – a rope along a flimsy swaying bridge over the chasm into which I might have dropped on the misfortune of one grade from one examiner. Luckily, the examiners, the stars, the fates, the troll mascots you put on the end of your pens, and the particular pen, the purchase of which had forced me into close proximity with Princess Anne when she arrived to open a wing of something at the same time I was heading on auto-pilot for the hospital shop, were all on form. I went from the arty ethnic diversity of Goldmiths’ to the echoing halls of UCL with its unisex students and sunlit dust motes, to the layer cake of rarefied academia at the IoP where Eysenck still lobbed a set or two on the tennis courts and Jo Brand was hollering at Ward 1 miscreants loitering in outpatients.

We’re at 1982 now. Better take a breather, we have Hot Parrots yet to come.

Part One of – probably – three.

Edited 14/05/17 to accommodate images displaced by change of theme.

Spirit of Enquiry conference, 2011

Spirit of Enquiry flyer imageI am very sorry to report that this conference has been cancelled. This is due to low levels of registration which, in turn, seem likely to be due to our lack of publicity at a key time (I was away and unable to expedite this – see link), and current pressures on clinical staff to meet necessary targets. The Trust is working hard to deliver complex services to a population of around 1.5 million people, and the present climate is not an easy one within which to operate flexibly. Front-line staff probably feel this more than any of us.

Hopefully, we will be back next year. Two guaranteed invitations to present will go to successful submissions from Jo Lee and Corrie Neilson. Jo is a senior physiotherapist with the Brighton & Hove Learning Disability team. Her paper, titled Passive Therapeutic Standing in the Neurologically Impaired Population, is a part of her Master’s dissertation with the University of Brighton, for which she earned a Distinction. Corrie’s paper,  An exploration into Second Life use with a Facially Disfigured Avatar, describes the research component of her Master’s in Foundations of Clinical Psychology & Mental Health from the University of Sussex, for which she too received a Distinction. Corrie has been a volunteer with Trust learning disability services and a care worker for adults with challenging behaviour in community services. She hopes to undertake Doctoral training in clinical psychology.

These are high quality pieces of work delivered by professional/aspirational clinicians at an early stage in their experience as researchers. The future of NHS innovation would seem to be in good hands.

Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities

Demo of BP equipment

SL demo of BP equipment

It can take a long time to translate the uphill trek of the funding application into the enervating research you set out to do And afterwards, there seems to be an even longer trail towards placing an academic report of that work in a suitable publication.  The Journal of Medical Internet Research (JMIR) is about as appropriate a positioning as we could have hoped for, with its focus on best use of technology in the interests of health. As you might expect, JMIR does not confine its publication to dry text, and so there are images drawn from the study, and even a video tour of the virtual environment. We are very pleased to be included.

Hall, V., Conboy-Hill, S., Taylor, D. Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities: Acceptability, Usability, and Potential Utility. Journal of Medical Internet Research, Vol 13, No 4 2011. Oct-Dec.  

Val Hall – university of Brighton

Dave Taylor – Imperial College London

Suzanne Conboy-Hill – Sussex Partnership NHS Foundation Trust & university of Brighton

Spirit of Enquiry Conference, Dec 5th 2011

Spirit of Enquiry flyer imageSussex Partnership Research & Development directorate is holding its third Spirit of enquiry conference on December 5th this year.  Designed to complement our major showcase event in the Summer, this conference invites submissions from new researchers who are Trust staff and partners, Trust staff and partners supported by us to complete research towards Masters or Doctoral degrees, and Trust staff and partners who have conducted research-relevant audit.

Our keynote speakers this year are Professor Val Hall (University of Brighton) on the Research Design Service, Stephanie Goubet (University of Brighton) on statistical methodologies, and Dr Nicky Petty (University of Brighton) on Professional Doctorates. Following the success of last year’s Ethics panel and discussion, there will be a similar opportunity to talk with our panel, about methodology in research.  Natalie Lambert, a senior research fellow at University of Brighton, will be joining us for that session.

The flyer is out now, the submission guidelines for papers and posters will be out very soon, and the draft programme will be available from early November. So, are you coaxing an MA or MSc to completion? Got a Doctorate by the tail and reeling it in? Pinned down some elusive service data that raise interesting questions about practice? We want to know about it!

Keep an eye on @SussResCon,  filter #SoE11, for updates.

Joint Congress of the European Association for Mental Health in Intellectual Disability & IASSID Challenging Behaviour & Mental Health SIRG

signpost for ManchesterThis is a first-of-its-kind conference; a joint enterprise between the Division of Clinical Psychology (British Psychological Society) and two European specialist learning disability associations. It is hosted by the DCP’s Faculty of Learning disability, which comprises psychologists working with people with learning disabilities, primarily in the NHS but also through local authority and third sector provisions.

Sussex Partnership is well represented.

Peter Baker is presenting his work  on positive behaviour support: Positive Behaviour Support Clinical and Process Outcomes: The P-CPO project.

Nicky Gregory (with Celia Heneage) a workshop: Group work with people who have learning disabilities; sharing ideas from clinical practice.

And I am presenting our findings for the virtual world study: Second Life, People with Learning Disabilities, & Capacity to Consent.

We’re in good company; Professor Nigel Beail, President of the European Association for Mental Health in Intellectual Disability, Theresa Joyce, Chair of the Faculty of Learning disabilities, Valerie Sinason, pioneering psychotherapist for people with learning disabilities, Prof Bill Lindsay, and Baroness Sheila Hollins are presenting, chairing and overseeing symposia. I recognise many of the other names on the programme. The ones I don’t, are probably the Nigel/Bill/Valerie/Theresa/Sheilas of tomorrow.

Look out Manchester, have we got a show for you in September!

Conference details via their web page:

What does it mean when a research journal is ‘high impact’?

A panorama of a research room taken at the New...

Image via Wikipedia

Ok, so I’m on leave and taking a break from writing a 2000 word creation-myth story, as you do. I was at two meetings recently where the impact of research was discussed. The first was to do with demonstrating the value of research to organisations; the second was with a group of service users with learning disabilities (Powerful Trainers). Not surprisingly, the prevailing interpretation of ‘impact’ in these two discussions differed significantly, and the problem of resolution has been bothering my thinking genie ever since.

As a clinician whose main output has been what might be termed ‘armchair’ discussion items rather than reports of active research, my concern has been to write material that might make a difference to practice by getting people thinking or offering new models of working. I never considered impact; beyond the notion that someone might pick up my article and do something with it. One of my first publications was the co-edited book (with Alexis Waitman) Psychotherapy and Mental Handicap, published in 1991 at a time when talking therapies for people with learning disabilities could only be accessed at The Tavistock, in London. That resulted in a series of workshops and presentations across the UK; the seeds of change were planted, and now this kind of therapy is routinely available. I would consider that to constitute impact, but does it?

In research circles, and so in organisations to whom researchers are accountable, the key measure of impact is citation, and preferably from within a journal that is, itself, frequently cited. Essentially, this means getting your paper accepted by a particular stable of peer-reviewed publications so that it will have a provenance of citation and so, it seems to me, will be more likely to be cited by someone else. Including yourself. Yes, you can cite your own papers and this counts. The argument in defence of this practice is that some fields are so highly specialised that the pool of possible referents is very small and you could hardly avoid citing your own work. The counter argument might reasonably be, well heck, how objective is that, then?

Supposing we accept for now that this is a good way of measuring impact. After all, acceptance by a prestigious journal like Nature is more likely to carry a stamp of quality and scientific rigor than something you read in the local paper, for instance. You might imagine, then, that there might be some sort of follow-up on readership (not subscriptions, actual readings) to evaluate the way in which the article is being used. Well, no, it seems not. Impact is calculated mathematically – this over that – to arrive at a value.  These are means, averages, over a specified period of time during which the number of citable articles cited by other citable journals is counted. There is also a PageRank Algorithm. You don’t want to know.

If you look at this with a degree of cynicism, what you might see is an incestuous cycle of citation-seeking among journals that might or might not ever see the light of day from the desks of the more applied practitioners among us. Personally, I am at a loss. High impact, as it is currently defined, feels remote, insular, and meaningless. Further, my book with Alexis would not have counted, although it seems to have had a major impact on practice in this country and is still on the reading list for many therapy courses worldwide.

I asked our service users at the second meeting, what ‘impact’ meant to them. They said ‘Tell us on your web site’, ‘Send it out by email’, and ‘Put it on twitter‘ because, they said, ‘someone might do something with it then‘. They wanted to see some action coming out of the research; some change, a new way of doing something. And they wanted to be part of that. Impact, for them, was much more visible, accessible, tangible, and isn’t that just as accountable? After all, our funding bodies ask us to make clear our plans for dissemination – not publication, note – on the application form, and they want to see how we take this back to the public.

It seems to me that the bodies calculating impact in terms of divisibles might benefit from liaising with the ones working on the communication of science to the public. Putting clinical research in particular right back in the hands and minds of service users, public, patients seems most likely to deliver meaningful impact than counting beans in a very small box.

So, over to you. What does impact mean to you? You should be asking us to keep the integrity of our work, make sure it is robust and properly conducted. You have to ask us to make sure it is meaningful. But after that, what should we see as ‘high impact’? What should we be aiming for? I don’t think this is either/or so let it rip!