Paola Mosconi|Cinzia Colombo|Roberto Satolli|Alessandro Liberati
PartecipaSalute, an Italian project to involve lay people, patients’ associations and scientific?medical representatives in the health debate
Mario Negri Institute for Pharmacological Research|Mario Negri Institute for Pharmacological Research|Mario Negri Institute for Pharmacological Research|Mario Negri Institute for Pharmacological Research
consumers patients increasingly demanding active role healthcare access quality associations pressure groups interacting directly national health services researchers doctors scientific professional societies14 article describes italian project aimed creating partnership among lay people patients associations scientificmedical community italy consumers generally passive recipients health information various sources doctors healthcare professionals health system media web parents peers information often contradictory nonevidencebased leading misunderstandings confusion di bella case outcry alleged new cure autism increasing number health awareness campaigns clear examples lack evidencebased culture among italian consumers patients associations see box 1 cope lay people must learn develop scientific literacy becoming familiar clinical epidemiological research acquiring instruments critically appraise understand health information although activities infancy italy good examples empowerment efforts see box 2 number consumer patients associations steadily growing survey 2003 italian national statistical institute5 identified 21 000 nonprofit organizations across country 50 increase compared 1997 survey organizations cover wide spectrum activities corresponding broad definition health including psychosocial support direct services findings confirm deeply rooted italian tradition mutual aid healthcare field last 10 years consumers patients associations extended interventions selfhelp care advocacy including important efforts convey information public organize awareness raising campaigns common european american countries patients federations emerging italy boost impact individual organizations lobby local national international level drawing health authorities attention need improvement given area610 led introduction patients charters mandatory presence lay representatives local ethics committees yet medical scientific community still fails see patients consumer groups partners equal rights weight consumers patients associations hand often lack critical appraisal skills struggle make voice heard healthcare debate also opportunities medical community patients associations meet work together experiences kind collected shared unlikely used development new projects planning project involving consumers patients associations scientific medical community reviewed consumer involvement initiatives countries united states united kingdom australia httpwwwcochraneorgconsumershomepagehtm accessed 27 october 200611 particularly inspired ukbased casp initiative critical appraisal skills programme offers courses healthcare professionals trainers consumers12 ii usbased lead initiative course developed national breast cancer coalition empowers breast cancer activists influence research public policy13 courses initiatives american association cancer research httpwwwaacrorghomesurvivorsadvocatesaboutthesurvivorandpatientadvocacyprogramaspx also learned interesting james lind alliance united kingdom coalition patients associations researchers clinicians working together identify areas uncertainty medicine define priorities clinical research14 aim article present partecipasalute participate health care pilot project initiated end 2003 following pilot experiences httpwwwpnlgit accessed 8 may 20061516 project funded nonprofit bank foundation compagnia san paolo aims involving patients associations coordinated mario negri institute collaboration italian cochrane centre medical journalism agency zadig multidisciplinary scientific committee composed representatives consumerpatients associations medical associations media researchers experts advises project activities projects main aim foster strategic alliance patients groups professional societies goal promoting better health shared decisionmaking throughout different phases partecipasalute involved patients associations lay people overall goal create cultural methodological conditions essential support increase shared initiatives consumerpatients associations scientific community project focused following main three areas championing role consumerpatients associations healthcare debate factfinding exercise unearth relevant experiences empowering patients launching website organizing courses patients representatives lay members ethics committees organizing collaborative initiatives consumerspatients representatives scientific medical community survey carried 2004 collaboration 10 patients federations cancer cardiovascular nervous system fields together associations long grassroots tradition aids breast cancer building upon previous experiences1516 working group developed semistructured interview topics covered included structure organization ie type activity capacity distribution centres training courses information sources attitudes beliefs information sources presidents patients federations contacted telephone asked participate one hour half interview two researchers pm cc conducted interviews analysed data open questions extracting principal themes messages second survey targeted italian federation medical societies fism designed assess medical societies attitudes towards patients involvement research health care find projects conducted partnership patients associations questionnaire developed based review relevant literature previous experiences working group members topics included characteristics societys structure organization number type collaborations patients associations opinions patients involvement projects 204 medical associations belonging fism contacted email covering letter explaining survey nonrespondents sent reminder survey concluded summer 2006 obtained responses 73 medical associations based experience mario negri institute italian cochrane centre zadig training course developed patients associations lay member ethics committees entitled decisionmaking clinical research health care course covered topics requested patients associations preliminary interviews meetings technical aspects clinical research potential roles voluntary organizations course seen opportunity different associations exchange information foster collaborations course commenced october 2005 offered within 6month period total 9 days packaged six modules dealing abc clinical research topics considered critical aspects clinical research coxib drugs flu vaccine oncological screening new oncological drugs air pollution developed five working groups plenary discussion one lecture two formal lessons two debates uncertainty conflict interests medicine topics considered antibiotics sore throat cardiovascular risk cards prostatespecific antigen developed three working groups plenary discussion three formal lessons two debates strategies health information topics considered hormonal replacement therapy stem cells lung cancer early diagnosis developed three working groups plenary discussion one formal lesson one debate patients associations credibility strengths topics considered history role credibility experiences patients associations developed one working groups plenary discussion three formal lessons one debate lay peoples participation ethic committees topics considered history regulations role lay people informed consent developed three working groups plenary discussion one formal lesson one debate ways influence research agenda topics considered literature reviews websites independent research developed three working groups plenary discussion two lectures three formal lesson one debate faculty made researchers doctors medical journalists associations representatives activists throughout course sought participants opinions using assessment forms similar used italian ministry health continuing medical education courses website launched september 2004 empower patients lay people associations healthcare professionals take active part healthcare decisions italy industrialized countries several healthrelated websites simply using word health reported url address found 873 000 pages italian google 5 december 2005 passive vehicles offering reports news without attempt appraise content enable readers evaluate information partecipasalute website based concept active participation offering selected articles debated health topics organized three main sections analysing topics different aspects showing possible implications medical news see box 3 website offer guides tools critically appraise health information play active role healthcare decisions understand payoffs limits clinical research collaborate medicalscientific community website updated weekly accept advertisements every 15 days newsletter emailed 2005 preparation consensus conference people severe cerebral injury consequences gcla relatives needs rehabilitation assistance posthospital period partecipasalute coordinated working group familys quality life conference promoted italian society physical medicine rehabilitation simfer collaboration patientsfamilies associations three working groups organized deal different research issues epidemiological data longterm outcomes cerebral injuries available healthcare services ii social healthcare needs people severe cerebral injury relatives according severity condition kinds outcomes iii critical aspects social rehabilitation injury focusing independence social life family role quality life partecipasalute multidisciplinary working group involving relatives patients severe brain injury consequences healthcare professionals gcla patients associations representatives identified two specific areas interest investigated ad hoc surveys first focussed associations contacting 68 italian gcla associations second targeted 453 families aim working group collect information gcla patients families needs suggestions quality improvements interventions details procedures areas investigated shown box 4 first two years project partecipasalute accomplished worthwhile results terms knowledge role patients associations health debate decisionmaking dissemination critical medical information gathering practical tools evaluate medical information thought website organizing training course growth sound group patientslay people representatives working together scientists collaborative initiatives courses consensus research projects etc findings patients federation survey presented table 1 structure organization participants varied considerably terms number members associations enrolled members representativeness boards existence scientific committee conflict interest emerged unfamiliar concept patients associations transparency fund raising rarely discussed17 associations federations asked whether policy transparency towards sponsor document competing interests five stated explicit statement transparency two one competing interests general associations federations two main targets patients families public increase awareness specific illness health problem activities supporting caring patients families disseminating information disease epidemiological burden prognosis disability etc interventions main interest advocacy increasing disease awareness circulation information particular topics lobbying examples second type activity almost every organization provides information patients families lobbying grown recent years nowadays main activity organizations stems associations aim strengthen influence achieving benefits members associations consider scientific literature important source information lack critical appraisal skills rely clinical experts appraise quality information patients associations rarely get involved research process defining priorities developing clinical trial protocols examples active collaboration mainly assembling questionnaires surveys conducting qualitative surveys among patients reviewing informed consent forms rarely patients consumers associations involved debates guidelines consensus documents clinical research challenges medical scientific dominance remain limited patients associations depend medical expert opinions decide part play health debates organize associations initiatives yet know assess validity healthcare information using standards critical evaluation associations collaboration arrangements scientific societies medical associations responding second survey varied widely terms year activity number members geographical distributions remarkably 36 medical societies 49 total organized collaborative initiatives patientsconsumers associations last three years among frequent preparation written material patients organization conferences workshops health awareness campaigns moreover eight medical societies published documents patients rights patients associations involved 50 initiatives training course challenging organize given lack previous experience build upon twentythree representatives different patients associations 17 lay members ethics committees 6 24 enrolled attended whole course participants feedback quality usefulness course reported table 2 generally well received although technical issues basic statistical concepts deemed difficult follow time practical exercises required participants also asked time discussion exchanging views information available httpwwwpartecipasaluteitattivitacmsqnode58 partecipasalute website registered monthly april october 2006 mean 14 000 contacts average 200 people month subscribed weekly newsletter furthermore every month website receives 40 comments least one new patients association asks included website database satisfaction recently found searching italian google engine words incertezza medicina uncertainty medicine partecipasalute first website listed 303 000 pages reported accessed 30 october 2006 finally respect goal foster strategic alliance patients groups professional societies consensus conference working group represented encouraging example effective collaboration clinicians scientists patients associations briefly results httpwwwpartecipasaluteitattivitaconferenza001php accessed 8 may 2006 two surveys showed organizational shortcomings posthospitalpostacute period difficulties finding clear information rehabilitation future conditions patients practical economic bureaucratic difficulties faced families finally heavy impact familys quality life data underlined jury consensus conference held june 2005 provided broader picture consequences severe cerebral injury focusing true needs patient family rehabilitation assistance posthospital period knowledge first project fully involving patient public advocates scientific community italy participation surveys satisfaction empowerment activities valuable results collaborative initiatives finally large number partecipasalute website visitors show interest public involvement increasing italy considering debate consumer involvement httpwwwcochraneorgconsumershomepagehtm accessed 27 october 2006414 monitoring advocates strength impact httpwwwcancerworldorgcancerworldmodulestaticpageaspxid754idsito5idstato1 accessed 27 october 200618 believe partecipasalute project concrete terms evolved new voice italian panorama however development partecipasalute several critical issues emerged consumers patients associations still fully accepted active players health professionals clinicians experiences collaboration still valued health debate involvement consumer patients associations healthcare institutions still unsatisfactory consumer patients associations promote participation healthcare debate following principles evidencebased advocacy19 still rarely integral part discussion within consumers patients associations opportunities training members consumers patients associations become routine order create groups equipped participate meetings discussions research projects members patients associations involved working groups extent felt enabled actively participate assessed explicit criteria consumer patients associations meet order qualify truly representative independent representative bodies urgently needed order increase transparency inclusion working groups recently discussed consensus study principles successful consumer involvement research11 critical points represent challenge future initiatives italy partecipasalute offer second edition training course specifically targeted consumers patients associations nonmedical members ethics committees continue develop website 2007 research activities concentrated development spazio parita patientoriented clinical research group following james lind alliance14 example organizing multidisciplinary working group build upon unanswered questions drugs health care identified consumerspatients associations together scientific community order start new activity readers partecipasalute website particular consumer patients associations invited answer two questions regarding priority clinical research relatively pathology interest partecipasalute supported compagnia di san paolo torino italy