(1839–1910) Medical history in Japan - Wellcome Trust

abnormal bowel movements, othersopenly discuss how their symptomsare exacerbated, if not directlytriggered, by stress; and whereas someclinicians and researchers direct theirattention to the microphysiologyof gut motility or endogenous painmodulation, others regard IBS less asa ‘disease’ and more as an expressionof psychological or social ‘dis-ease’.I will be using both oral historyand documentary (archival) sourcesto explore such debates and plan tointerview leading gastroenterologistsand researchers, front-linepractitioners, and members of patientsupport groups. The research will beorganised around four key themes:the emergence of the concept of IBSand subsequent changes in nationaland international understandings,classifications, and treatments ofthe condition; the shifting role andboundaries of IBS care; patientexperiences and the development ofpatient support networks; and the roleof drug and health food companies.My focus will be on the past 50 yearsbecause although the term ‘IBS’ canbe traced back to the interwar period,it was not until the 1960s that it wasmore generally adopted. Its definitionand diagnostic criteria remained vagueand contested, however – a situationthat, in the late 1980s, a group ofleading gastroenterologists soughtto remedy through what came to beknown as the Rome Process. This is anongoing international expert consensusexercise, sponsored by − butostensiblyindependentof − the pharmaceutical industry,and designed to establish guidelineson the classification and diagnosisof functional gastrointestinaldisorders, including IBS. The mostrecent exercise, ‘Rome III’, involved87 participants from 18 countries.Although the Rome Process has beengenerally welcomed, its findings remaincontentious: although many wouldargue that it has given IBS a legitimacyit previously lacked, critics claimthat, driven largely by the agendasof the pharmaceutical industry andthe need to establish standards forentry into clinical trials, it has littleimpact on everyday clinical practice.Clinical practice has, over theyears, shifted from secondary toprimary care and from treatment toself-management. Thus, whereas thepatient in early literature was portrayedvery much as the passive recipientof medical expertise, the focus morerecently has been on understandingand working with patients’ perceptionsand expectations, with an emphasis onnegotiation, patient empowerment andthe ‘expert patient’. In part, this reflectsthe more general shifts – both real andrhetorical − in the power relationshipsbetween doctors and patients over thesecond half of the 20th century andthe rise of the ‘patient consumer’ andpatient activism. Precisely how thishas played out in relation to IBS is mycurrent focus: a case study of the IBSNetwork, the UK’s oldest and largestIBS support group, which was foundedin 1991. I am tracingits evolutionfrom asmall network of individual sufferersand self-help groups, coordinatedby two committed and energeticvolunteers, to – by the mid-2000s – afully fledged health consumer group(renamed The Gut Trust) with ahighly professional image, the fundsto match, and an ambition to becomethe voice and face of IBS for sufferers,the medical profession and the widerworld. Of particular interest is itssubsequent demise and relaunch, andI will be exploring the extent to whichthe recent fortunes of the organisation(which has now re-adopted its oldname, the IBS Network) reflectthe harsh realities of the businessenvironment in which health consumergroups now operate, or whethersome of its difficulties stem from thefact that, despite its almost epidemicproportions, IBS continues to occupy ahighly problematic position within thepublic and professional imagination.In broad terms, my researchwill contribute to the small butgrowing body of work on chronic,contested diseases of the late 20thcentury, providing a UK focus in afield currently dominated by USbasedstudies, and moving away fromhigh-profile disorders to a conditionthat, although deemed not medicallyserious, accounts for a hugeamount of everyday suffering.Dr Val Harrington is attached to the Centrefor the History of Science, Technology andMedicine at the University of Manchester(E valerie.harrington-2@manchester.ac.uk).6 | Wellcome HISTORY