CHF_ Consumers and Electronic Health Records

CHF%2c+Consumers+and+Electronic+Health+Records%0d%0a%0d%0aAmanda+Bresnan+Consumers%e2%80%99+Health+Forum+of+Australia%0d%0a%0d%0a%0cConsumers%e2%80%99+Health+Forum+of+Australia%0d%0a%e2%80%a2+National+peak+health+consumer+organisation%0d%0a%e2%80%93+Established+1987+%e2%80%93+Funding+from+Federal+government%2c+membership+and+specially-funded+projects%0d%0a%0d%0a%e2%80%a2+Vision+%e2%80%93+consumers+shaping+health+in+Australia+%e2%80%a2+Mission+%e2%80%93+to+provide+an+informed+and+respected+voice+on+national+health+issues%0d%0a%0d%0a%0cCHF+is+membership-based%0d%0aVoting+member+organisations+represent+nearly+1+million+people+-+Population+%e2%80%93+older+people%2c+women%2c+culturally+diverse+groups+-+Illness+and+self-help+%e2%80%93+diabetes%2c+asthma%2c+arthritis%2c+cardiovascular%2c+HIV%2fAIDS+-+Health+interest+%e2%80%93+state%2c+community+groups%0d%0a%0d%0a%0cElectronic+Health+Records+for+CHF%0d%0a%e2%80%a2+2000+%e2%80%93+consumer+workshops+in+each+state+and+territory+looking+at+MediConnect+and+HealthConnect%2c+and+computers+in+general+practice+%e2%80%a2+2001+-+developed+Consumers+and+E-health+Project+Principles+%e2%80%a2+2002-04+%e2%80%93+consumer+representation+continues+%e2%80%93+MediConnect+Development+Group+(field+tests+in+Launceston%2c+Tasmania+and+Ballarat%2cVictoria)+%e2%80%93+HealthConnect+Stakeholder+Reference+Group%0d%0a%0d%0a%0cElectronic+Health+Records+Project+2004-2005%0d%0a%e2%80%a2%0d%0a%e2%80%a2+%e2%80%a2+%e2%80%a2+Project+objectives%3a+Improve+communications+and+engagement+with+consumers+and+the+community+Undertake+consumer+consultations+and+provide+input+to+the+Department+of+Health+and+Ageing+Support+informed+and+effective+consumer+representation+on+national+committees+Develop+links+between+consumer+representatives+at+State+and+National+levels%0d%0a%0d%0a%0cElectronic+Health+Records+Project+Activities%0d%0a%e2%80%a2+Project+page+on+CHF+website+%e2%80%93+www.chf.org.au+%e2%80%a2+E-health+resource+group+email+list+%e2%80%a2+Consumer+Representatives+Workshop+%e2%80%93+Best+practice+principles+for+consumer+participation+in+HealthConnect+%e2%80%a2+Project+information+paper+and+questionnaire+%e2%80%a2+Member+information+sessions+%e2%80%93+TAS%2c+ACT%2c+WA%2c+SA%2c+NSW+and+QLD%0d%0a%0d%0a%0cHealthConnect+consumer+benefits%0d%0aConsumer+Access+%e2%80%a2+Consumer+access+to+their+own+health+record+%e2%80%a2+The+record+will+be+available+across+the+country+%e2%80%a2+Rural+and+remote+consumers%e2%80%99+information+is+received+on+time+when+visiting+health+care+providers+in+larger+towns+or+cities+Safety+%e2%80%a2+Improved+safety+through+better+access+to+health+information+%e2%80%a2+Access+to+vital+medical+data+in+an+emergency+%e2%80%a2+Current+medication+records+help+avoid+mistakes%0d%0a%0d%0a%0cHealthConnect+consumer+benefits+(cont)%0d%0a%e2%80%a2+%e2%80%a2+%e2%80%a2+%e2%80%a2+Communication+Better+understanding+of+health+information+through+developing+stronger+partnerships+between+consumers+and+health+care+providers+Better+communication+between+their+different+health+professionals+is+better+for+consumers+Assistance+to+consumers+who+may+have+difficulty+recalling+relevant+health+information+Medical+histories+will+not+have+to+be+repeated+with+every+visit+to+a+medical+practitioner%0d%0a%0d%0a%0cOngoing+concerns+for+consumers%0d%0a(moving+into+implementation)%0d%0a%0d%0a%e2%80%a2%0d%0a%e2%80%a2+%e2%80%a2+%e2%80%a2%0d%0a%0d%0aConsumer+access+and+control+Want+to+retain+control+over+their+own+personal+health+information+by+deciding+whether+or+not+to+participate+Must+be+able+to+control+who+accesses+their+record+Must+be+able+to+readily+access+and+make+contributions+How+is+the+national+health+identifier+being+developed+and+how+will+consumers+be+involved%3f%0d%0a%0d%0a%0cOngoing+concerns+for+consumers+(cont)%0d%0a%e2%80%a2%0d%0a%0d%0a%e2%80%a2+%e2%80%a2+%e2%80%a2%0d%0a%0d%0aImproving+communication+on+HealthConnect+Involve+and+consult+a+variety+of+consumer+and+community+groups+in+the+development+and+implementation+process+How+will+consumer+representatives+be+selected%3f+Publish+the+results+from+all+HealthConnect+trials+and+MediConnect+field+tests+ASAP+How+will+consumers+be+informed+and+involved+in+decisions+about+the+use+of+personal+health+information+for+research%3f%0d%0a%0d%0a%0cOngoing+concerns+for+consumers+(cont)%0d%0a%e2%80%a2%0d%0aSecurity+Issues+with+privacy+and+consent+including+for+specific+groups%2c+eg+mental+health%2c+HIV%2fAIDS%2c+and+women%e2%80%99s+groups+Need+to+develop+strong+monitoring+and+auditing+processes+Governance+Who+will+actually+have+responsibility+for+the+system%3f+Who+is+ultimately+accountable%3f%0d%0a%0d%0a%e2%80%a2%0d%0a%0d%0a%e2%80%a2+%e2%80%a2%0d%0a%0d%0a%0cCHF+outcomes+for+2004-05%0d%0a%e2%80%a2+Establishing+health+consumer+networks+for+consumers+involved+with+and+interested+in+electronic+health+records+across+Australia+%e2%80%a2+Working+with+consumer+representatives+and+Health+Departments+in+implementation+states+and+territories+(TAS%2c+SA+and+NT)+and+trials+states+(QLD+and+NSW)+%e2%80%a2+Providing+support+to+consumer+representatives+on+state+and+national+HealthConnect+committees+-+strong+links+with+consumer+representatives+associated+with+AHIC+and+the+HealthConnect+Board%0d%0a%0d%0a%0cCHF+outcomes+for+2004-05%0d%0a(cont)%0d%0a%0d%0a%e2%80%a2+CHF+Executive+Director+and+a+member+of+Project+Steering+Committee+on+AHIC+%e2%80%93+seeking+to+influence+NEHTA+though+this+forum+%e2%80%a2+2004+consumer+representative+e-health+workshop+%e2%80%a2+Member+information+sessions+%e2%80%a2+Raising+consumer+concerns+as+they+emerge+%e2%80%a2+Submission+to+the+HealthConnect+Business+Architecture+Version+1.9+(Draft)%0d%0a%0d%0a%0cCurrent+key+consumers+issues%0d%0aConsent+%e2%80%a2+Should+consumer+consent+be+required+to+collect+personal+health+information+on+a+national+electronic+health+records+system%3f+Example+%e2%80%93NSW+Health+e-link+and+amendment+to+privacy+legislation%0d%0a%0d%0a%0cCurrent+key+consumers+issues+(cont)%0d%0aAddressing+privacy+concerns+of+consumers+%e2%80%a2+Should+there+be+specific+legislation%3f+%e2%80%a2+%e2%80%98Your+privacy+is+guaranteed%e2%80%99-+how%3f+%e2%80%a2+No+National+Privacy+Code.+%e2%80%93+National+Privacy+Principles+apply+to+private+sector+and+health+service+providers+(Federal+Privacy+Act)+%e2%80%93+Information+Privacy+Principles+apply+to+Commonwealth+and+ACT+Government+agencies+(Federal+Privacy+Act)+%e2%80%93+States+and+Territories+with+a+range+of+approaches+which+apply+to+hospitals+and+state-based+services%0d%0a%0d%0a%0cCurrent+key+consumers+issues+(cont)%0d%0aHealthConnect+information+registers%2c+data+linkage+and+research+%e2%80%a2+Are+consumers+informed+about+what+we+do+now%3f+%e2%80%a2+Can+we+develop+protocols+to+enable+safety+and+quality+improvement%3f%0d%0a%0d%0a%0cCurrent+key+consumers+issues+(cont)%0d%0aInformed+decision-making+for+consumers+%e2%80%a2+How+can+we+ensure+consumers+receive+adequate+information+to+enable+them+to+make+an+informed+decision+about+participating+in+the+electronic+health+records+system%3f+%e2%80%a2+Do+we+have+clear+and+accurate+information+about+what+HealthConnect+is%3f%0d%0a%0d%0a%0cFurther+information%0d%0a%e2%80%a2+See+CHF%e2%80%99s+redeveloped+website+www.chf.org.au+%e2%80%a2+Read+The+Australian+Health+Consumer%0d%0a%0d%0a%0c