II. Time to engage
2012; Elsevier BV; Volume: 109; Issue: 5 Linguagem: Inglês
10.1093/bja/aes363
ISSN1471-6771
Autores Tópico(s)Dental Anxiety and Anesthesia Techniques
ResumoOn November 7, 2012, the Science Museum in London will launch Pain Less—an exhibition, website, and series of public events on contemporary research in pain medicine and anaesthesia. It will be held in Antenna, the Science News gallery run by the Contemporary Science team. In its 11 month run, the exhibition is expected to attract more than a million visitors. It is the first major exhibition the Museum has held on our speciality in living memory and represents an unprecedented opportunity for the profession to engage with the public. Details of the preliminary stages of the project were published last year as part of a national call for ideas and potential exhibits.1Morley A Nilsson K The science museum wellcomes anaesthesia.Roy Coll Anaesth Bull. 2012; 70: 46-49Google Scholar The response has been overwhelming—from pharmacologists in Dundee to psychologists in Plymouth, from large urban academic departments to lone enthusiasts in district general hospitals. Suggestions have come from anaesthetists who are also inventors, film makers, broadcasters, or servicemen/women. From outside the scientific world, there have been offers and ideas from visual artists, businesses, and historians. Many anaesthetic trainee volunteers have been involved, reviewing current literature and proposing research for inclusion in the exhibition. It is intended that they will have a significant role in the public events scheduled after the exhibition opens (see below). In December 2011, a catalogue of more than 60 different research themes was presented to the Museum exhibition team, together with supporting materials. The themes were grouped into four categories: (i) What is anaesthesia and how does it work? (ii) What happens when I am ‘asleep’? (iii) Will it hurt when I wake up? (iv) Can you make it any safer? The Museum then spent several weeks reviewing and following up suggestions, accumulating related literature, and contacting individual researchers. In the spring, they hosted an event each for teenage schoolchildren and chronic pain patients to establish what aspects of anaesthetic and pain research most interested them. These two groups have subsequently been creating an exhibit apiece with the Museum’s contemporary science team. Teenagers have participated in creating exhibits at the Museum before (Fig. 1). On this occasion, the Pain Less group wanted to collaborate with Museum staff and computer games developers on an interactive exhibit. They hope to be testing a prototype game in the autumn, with a final version to be included in the exhibition, and the collaborative process has been recorded in a blog.2Science MuseumOuch!ouch!ouch!.http://sciencemuseumsenseless.wordpress.comGoogle Scholar The chronic pain patients have chosen to make a video about their personal responses to the other exhibits. The Museum is now applying to Pain Less their well-established process for developing temporary exhibitions. This does not merely involve trying to weave a plausible story around the most striking potential exhibits and, at the time of writing, some very hard choices have just been made. The overarching message of the exhibition, the constituent messages which will recur throughout, and the individual subject areas for each section have recently been collated in the ‘content hierarchy’—a standard exhibition document signed off by the Deputy Director of the Museum. Important considerations in creating this hierarchy have been the space available, the necessity for a single unifying theme, and, crucially, the topicality and likely appeal of the research to be included. Given these considerations and the level of overall funding for pain research, compared with that for operative anaesthesia, it is unsurprising that the exhibition will focus predominantly on the former. Pain Less will investigate how recent research on pain and consciousness might help us to overcome pain in future. At present, the plan is to address these principal questions using appropriate current research stories: (i)Will future pain treatments target both the body and mind, given the significant effects of mood on pain perception?This section will feature equipment used for the administration and measurement of pain in experimental conditions. Insights provided by functional magnetic resonance imaging will be accompanied by interviews with leading researchers and the participants in their studies.(ii)Can the brain be educated, or even deceived, to alleviate symptoms in chronic pain patients?Recent research on phantom limb pain will be presented here—from the mirror box to the Xbox®.(iii)How do the brain and body react to painful stimuli when we are under anaesthesia and how can we use this information?Topics proposed for inclusion in this section include functional electrical impedance tomography of evoked responses (fEITER) and ongoing controversies with existing monitors of consciousness. Also planned are interviews on the potential psychological effects of implicit awareness during surgery and reference to the Royal College of Anaesthetists (RCoA) Fifth National Audit Project.(iv)Can toxicology and genetics help us develop more effective painkillers with fewer side-effectsPotential exhibits include tarantulas, DNA sequencers, and interviews (individuals with pain-free mutation, ‘venom farmer’).There are plans for an interactive exhibit which will allow the Museum to collect data on visitor response to the questions and topics raised by the exhibition. Further information of this sort is likely to come from the new Pain Less section on the Museum’s website, which will link to those of the RCoA and the Association of Anaesthetists of Great Britain and Ireland (AAGBI), and from the several post-launch events. Some of these events will take place on the exhibition floor, when the gallery is open, and some after hours in the Dana Centre, the Museum’s adult-only venue. A Wellcome Trust Society Award is funding 60% of the £250 000 project budget. The remaining costs are being met by the Science Museum and by contributions from several anaesthetic professional bodies and specialist societies. Wellcome Trust Society Awards are administered through the Trust’s Engaging Science Grants programme, as are Arts Awards, Broadcast Development Awards, Science Media Studentships, Engagement Fellowships, and more. The programme offers nearly £4 million each year for projects that encourage ‘… people to consider, question and debate key issues in science and society’.3Wellcome TrustFunding/public engagement.http://www.wellcome.ac.uk/Funding/Public-engagement/index.htmGoogle Scholar This quote from the Wellcome Trust website effectively describes a phenomenon now widely known as public engagement. A fuller definition comes from the National Co-ordinating Centre for Public Engagement (NCCPE): ‘[It] describes the myriad of ways in which the activity and benefits of higher education and research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit’.4National Co-ordinating Centre for Public EngagementNCCPE definition.http://www.publicengagement.ac.uk/whatGoogle Scholar The most eye-catching public engagement initiatives often involve the arts. Previous Wellcome Trust-funded projects include The Etherdome (Penny Dreadful Productions; funded 2011), a theatrical piece about the discovery of anaesthesia, and Ether Frolics (Fuel Theatre Ltd; funded 2005), an exploration of consciousness, pain, medical science, and anaesthesia. The earlier Perceptions of Pain (funded 2001)5Padfield D Hurwitz B Pither C Perceptions of Pain. Dewi Lewis Publishing, Stockport2003Google Scholar is an extraordinary series of images created in collaboration with chronic pain sufferers. The other award winner in the Pain Less round was Wondermind (funded 2011). This collaboration between the Tate Museums and University College London aims to introduce key neuroscience concepts in brain development to children, using works from the Tate Collection and visual illustrations of Lewis Carroll’s Alice in Wonderland. The very cynical might deem such activities beneficial for anaesthesia only until the next tabloid headline about epidural-induced paralysis. I disagree. Public engagement is not the same as public relations. As the definition above makes clear, it serves a much broader purpose. When last assessed in 2001, traditional public relations were failing us at the most basic level. Then, 40% of respondents in a MORI Social Research Institute survey were then unaware that anaesthetists are doctors.6Ipsos MORITwo-fifths of the British public are unaware that anaesthetists are doctors.http://www.ipsos-mori.com/researchpublications/researcharchive/1367/Twofifths-of-the-British-public-are-unaware-that-anaesthetists-are-doctors.aspxGoogle Scholar It would be instructive to find out whether that proportion has decreased in the intervening decade. Latterly, the RCoA and AAGBI have established an honourable track record in dealing with the public. The results of the MORI poll inspired National Anaesthesia Day. Since then, the ubiquity of the Internet has enabled both organizations to adopt a more sophisticated approach. A wide range of patient information leaflets is now available,7The Royal College of AnaesthetistsInformation about anaesthesia.http://www.rcoa.ac.uk/patientinfoGoogle Scholar including a series specifically on risks,8The Royal College of AnaesthetistsThe risks of anaesthesia.http://www.rcoa.ac.uk/patients-and-relatives/risksGoogle Scholar and the RCoA hosts a Patient Information Unit. More significant, in my opinion, has been the increase in the RCoA Patient Liaison Group, established in 1998. With its emphasis on dialogue, rather than instruction or advertisement, this is putting the relationship between our profession and the public on a more sustainable footing. Pain Less will, with luck, be a further step in the right direction. Growing awareness of the importance of public engagement is not restricted to the UK. In 2011, the Australian and New Zealand College of Anaesthetists (ANZCA) redesigned its website with emphasis on informing prospective patients and members of the public about various forms of anaesthesia and related topics. ANZCA also have community representatives on several committees, including those relating to education and training, research, and international medical graduate specialists. This accords with ANZCA’s Community Representation Policy, which deems the engagement of community representatives ‘a valued means of supporting transparency and consistency in decision-making’.9Australian and New Zealand College of AnaesthetistsCommunity representation policy.http://www.anzca.edu.au/resources/corporate-policies/ANZCA%20Comm%20Rep%20Policy%20-%20Fees.pdfGoogle Scholar In the USA, the ASA is engaged in a number of public initiatives. As with corresponding UK and Australian institutions, patient information is available on the ASA website—this time in the shape of a video series.10American Society of AnesthesiologistsAnesthesia topic videos.http://www.asahq.org/For-the-Public-and-Media/ASA-Videos.aspxGoogle Scholar The ASA also sponsors the Anesthesia Awareness Registry—a database to which patients who have experienced unintentional awareness under general anaesthesia can contribute directly.11Anesthesia Awareness Registry, Available from http://depts.washington.edu/awaredb/join.shtml accessed 22 August 2012.Google Scholar The most significant public influence on national anaesthetic practice in the USA seems likely to be an indirect one, mediated through patient representatives on the 33 US Food and Drug Administration (FDA) advisory committees and their constituent panels.12US Food and Drug AdministrationPatient involvement.http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/PatientInvolvement/default.htmGoogle Scholar Committees relevant to anaesthesia include those on Anesthetic and Life Support Drugs, Drug Safety and Risk Management, and Medical Devices. Patient representatives who serve on those advisory committees reviewing therapies and products, or issues other than those related to medical devices, are usually voting members. Committee meetings may also entail invited testimony from specific patients other than the formal representatives. At open public hearing sessions of the various committees, the public may attend and present data, information, or views, orally or in writing, on the issues pending. Recently, these sessions have been made available generally, free of charge, as live webcasts. If the whole concept of public engagement still feels a bit too warm and fuzzy, there are entirely pragmatic reasons for the anaesthetic profession in the UK to take it seriously. Substantial funds are available. The NCCPE, cited above, was established in 2008 as part of the Beacons for Public Engagement (BPE) scheme. BPE was backed by £9.2 million from the Research Councils UK, Higher Education Funding Council for England, and Wellcome Trust. After a favourable independent review of the original scheme in 2011, Research Councils UK announced its Catalysts grant call, the purpose of which is ‘to embed public engagement with research in UK Higher Education Institutions’. Grants of £300 000 each were recently awarded to six universities.13Research Councils UKRCUK announce public engagement with research Catalysts call grant winners 2012.http://www.rcuk.ac.uk/media/news/2012news/Pages/050412.aspxGoogle Scholar In addition, the major bodies funding clinical research have for some time required grant applicants to address public engagement issues. The Wellcome Trust’s stance is well known. The Medical Research Council ‘requires all applicants to include information on the potential economic and societal impacts of their research as part of their applications’.14Medical Research CouncilHandbook for Applicants. 2012; (Available from) (accessed 22 August 2012): 24http://www.mrc.ac.uk/consumption/groups/public/documents/content/mrc001873.pdfGoogle Scholar Finally, the National Institute for Health Research (NIHR) has just appointed its first National Director for Public Participation and Engagement.15National Institute for Health ResearchNIHR appoints national director for public participation and engagement in research.http://www.nihr.ac.uk/news/Lists/News/DispForm.aspx?ID=1295Google Scholar NIHR encourages the active involvement of the public in its funded projects at all stages. These stages include setting research priorities and identifying research questions, assessing research proposals, and publicizing results. One can imagine that funding applications which address these issues effectively from the outset might be more likely to succeed. A specific example from another discipline serves as a useful illustration. Since 2001, the Service User Research Enterprise (SURE), part of the Institute of Psychiatry at King’s College London, has pioneered a collaborative approach to research with people with mental health problems and their carers. Its first national study, on patient perspectives in electroconvulsive therapy,16Rose D Fleischmann P Wykes T Consumers’ perspectives on ECT: a qualitative analysis.J Mental Health. 2004; 13: 285-294Crossref Scopus (31) Google Scholar was commissioned by the Department of Health and influenced the 2003 National Institute of Clinical Excellence guidelines on the treatment.17National Institute for Health and Clinical ExcellenceElectroconvulsive therapy (ECT) (TA59) 2003.http://www.nice.org.uk/guidance/index.jsp?action=byID&r=true&o=11494Google Scholar More recently, SURE has developed CHOICE-PTSD, a user-generated measure of satisfaction with cognitive behavioural therapy for post-traumatic stress disorder. The principal SURE investigator was a service user researcher. Other service users were consulted during research design, influencing choice of endpoints and follow-up strategies.18King’s College LondonService users’ satisfaction with cognitive behaviour therapy for comorbid schizophrenia and post traumatic stress disorder.http://www.kcl.ac.uk/iop/depts/hspr/research/ciemh/sure/projects/SchizophreniaandPTSD.aspxGoogle Scholar CHOICE-PTSD was specifically designed as part of an NIHR-funded interventional randomized controlled trial.19UK Clinical Research Network: Portfolio DatabaseThe acceptability and effectiveness of cognitive behavioural therapy for the treatment of posttrauma: the acceptability and effectiveness of cognitive behavioural therapy for the treatment of posttraumatic stress disorder within schizophrenia (ISRCTN 67096137).http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=6683Google Scholar Despite its evident applications, public engagement will not appeal to all. Its literature, like that pertaining to health administration, is not for those averse to abstract nouns. There may be little to choose in terms of literary style between management documents about ‘strengths based leadership transactional analysis’ and accounts of ‘reflexive public engagement activities in various communication situations’. Nevertheless, the former are arguably more often the harbinger of bad news than the latter. There is also the question of quality. If we still struggle to measure something as apparently straightforward as our individual clinical performance, how much more difficult it is to judge the worth of a public engagement initiative. How will we know if Pain Less is a success? There will, of course, be quantitative data—on visitor numbers and website hits, for example. These, however, will not allow us easily to discern what has drawn the audience in, and what they have found most stimulating once they are there. Nor will we know what they want to say to us about our speciality. For this, qualitative evaluation is more appropriate—an area with which many clinicians feel uncomfortable and one which probably merits an editorial in itself. Nevertheless, the impact of this sort of evaluation is often more striking than a simple score, as is apparent in recent feedback from schoolchildren visiting the Mushin Museum of Anaesthetics in Cardiff, Wales (D. Huckle, personal communication, 2012). They went to learn about the difference between historical anaesthesia and current practice. The experience in the modern operating theatre was rated ‘Excellent’ unanimously but some of the comments about the whole day tell a more useful story. … really interesting. … Made me feel like I want to do something like that in the future. It is awesome and I am a lot more [inspired] to be in medicine in the future. Seeing what is actually like to be a doctor has made me want to be involved with it more. I realised that you can have a career in anaesthetics and still get to experience the action of surgery. Encouraging stuff—but the comments are, perhaps, rather less specific about anaesthesia than one might wish. On the strength of these, I suspect it will take much more than a half-hearted poster campaign to attract the brightest medical students of the future into our speciality. This will rely, instead, on improving our public profile overall in the long term. We need to keep building genuine two-way relationships with as many different groups as possible, whether they are exhibition visitors, theatre audiences, gallery-goers, grant funders, patients, or doctors-to-be. Everything else aside, they all vote for the people holding the purse strings. It is no exaggeration. Public engagement is the key to the survival of our profession. A.P.M. established the Pain Less expert network and has assisted in curating the exhibition. He was the co-applicant, with the Science Museum, for the Wellcome Trust Society Award which is part-funding the project. His salary replacement costs during the project have been met partly from this award and partly by King’s Health Partners, an Academic Health Sciences Centre.
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