You Already Have a My Health Record (MHR)

No security can be claimed for Australia's new My Health Record. Staff at hospitals can download patient records from the central database, copy them, then take the information home. Password gateways are useless. No hacking is needed.

Lose my health record

Records have been kept for years on people in hospitals anyway. Many have found that they already have an MHR record when they attempt to opt-out. After October 15 clearing your data is not possible. It cannot be deleted, only cancelled - whatever that means.

Apparently, cancelled records will be kept in the cloud for 30 years. Don't be fooled. Governments can bring in new rules to access them. Politicians of all colors know the future will be Orwellian. There will be nowhere to hide and everything about you will be known by the state.

The government started My Health Record without your consent six years ago. It was called the Personally Controlled Electronic Health Record (PCEHR). A patient was pestered after release from hospital. He received a letter requiring a signature. He sent a letter to the source saying no signature would be given. He received that same health record letter three more times.

Patients in recovery are asked to sign a lot of things. Did you sign on the PCEHR? Think back. You may have! You can even unknowingly sign the form at a Medicare office and while visiting a GP. Is the government deceitful? Thankfully, politicians will be in the same boat as the rest of us.
greg hunt
For now I will be opting out of MyHealthRecord. issue MyHealthRecord troubling me. I lack eloquence express my concerns sometimes, please bear me. I’ve thought long hard issue active discussion may leading doctors Australia backchannels. It important topic one impacts everyone. This MY opinion mine alone. I conflict interest declare think important individuals their mind matter. There excellent articles online media now – I’ve included list ‘further reading’ stuff I found helpful bottom page. Conversation offer balanced arguments opt opt (click read). It would good share information MyHealthRecord pros cons friends, family limited time opt out…the period runs three months July October 2018. MyHealthRecord created populated automatically. If want MyHealthRecord, do nothing – one created automatically. If unsure, please read decision – opt 5-10-18 MyHealthRecord created. Now read on… I am doctor. For me, cornerstone business medicine consent confidentiality. It’s pretty sine qua non job – “primum non nocere” (first do harm). I seriously, do my colleagues. We protect health information ensure health records – visiting primary care doctor hospital – remain accurate confidential. Perhaps THIS why shambles #MyHealthRecord concerns me. I am Luddite. I consider myself tech-savvy. I welcome use technology medicine. I am acutely aware problems face health care improve safety. Most problems revolve communication. Ironically one biggest problems face healthcare disconnect various systems. This daily frustration patients clinicians. Despite efforts, primary care doctors frustrated discharge summaries letters routinely arrive several days – even weeks – episode care hospital specialist clinic. We commonly hear exasperated cry “ isn’t – computer?“. If only. failure different parts health system communicate perform proper handover care major safety risk. Particular danger points include knowing happened recent episode care (admission diagnosis, changes medications, actions followup) danger drug-seeking behaviour ‘doctor-shopping’ – particular abuse powerful S8 medications benzodiazepines opiates. So earth MyHealthRecord why I opted out? Read inform yourself. Many clinicians keen idea electronic health record made available patient clinicians regardless location. Wouldn’t amazing? It hold details recent investigations (blood tests imaging), summary medical history on. WHAT IS MY HEALTH RECORD? You can read MyHealthRecord here. Put simply, My Health Record online summary key health information. It NOT replacement health care providers clinical records. It – – summary health information. It controlled you, doctor. You control uploaded can delete records. Sounds great. Why opt out? ACLINICAL RECORD must ACCURATE, USABLE Most clinical software incredibly powerful. clinical software GPs desktop presents easy-to-navigate summary health information, option easily delve past notes, medications, family history, letters out, results blood tests imaging … mouse clicks. We pay LOT software heavily protected passwords backups. It highly functional (mostly) works well compared paper notes. We can easily navigate entire file, send letter, print script, order imaging tight time constraints typical min appointment. software allows highly effective sorting vast amounts health data.

course file held clinic. Which means health information available any random clinician who wants search record. Staff sworn protect information can easily audit WHO opens record. software constantly evolving response clinician feedback major clinical software providers charge motza this. It’s SO better system paper file notes. This NOT MyHealthRecord. Instead nuanced system integrates clinical workflow, MyHealthRecord likened ‘shoe box’ files. Navigation difficult user faced smorgasbord PDF documents can slow load … hard collate assimilate. This likely o worse information added, content aggressively curated. Moreover whilst MyHealthRecord tracks patient file opened, tracking organisation, individual. So Hospital X opens file, really wont it’s uber-secialist Prof X who perusing file…or bored pharmacist, idle radiographer admin clerk. access. Hmmmmmm.. There concerns MyHealthRecord fragments communication, enhances! IS MY HEALTH RECORD ACCURATE SUMMARY OF HEALTH INFORMATION? It may – may not be. There term used information technology; GIGO ‘garbage garbage out’. Your health summary MyHealthRecord may accurate recent…or may contain mistakes outdated. This problem. Unless record aggressively curated maintained, risk information becomes unreliable – therefore dangerous doctor patient. At present responsibility uploading health summary placed firmly squarely primary care. Problem is, doctors already busy their focus maintaining fidelity accuracy their records. able ensure online MyHealthRecord date, integration their clinical software seamless. And not. To complicate matters, PATIENT-CONTROLLED record. I think it’s great empower patients manage their records, I really do. clinicians retros contain harsh truths. history drug-dependence may important individual presents repeated doctors seeking opiates…and individuals can remove contents record MyHealthRecord, making unreliable. Similarly details important family history, domestic violence, infectious disease status may hidden clinician. That shouldn’t problem healthy doctor-patient relationship partnership, mutual trust. records keep clinic sacrosanct do share them. accurate record medical information – do omit details allow record expunged inaccurate untrue. It’s important part trust placed us. BUT ARE DOCTORS PAID TO USE MY HEALTH RECORD? Short answer is No. Your GP private business. clinic invested heavily IT infrastructure includes secure download results documents, purchase clinical record system, ensuring recalls managed on. Their focus maintaining clinic records ensuring patient notes remain secure. cost seeing doctor covers doctors income, staff wages, rent, utilities (phone, gas, electric, water, internet), equipment, course vital IT infrastructure. It true Practice Incentive Payments made accredited primary care clinics – payment specifically IT. In past incentive payment would go towards annual cost practice IT budget used ensure secure messaging, prescribing electronically ensuring patient database contained useful information diagnoses etc targeted recall (e.g. health checks, overdue cervical smears, immunisation registry etc). recent years ePIP become dependent mandatory use MyHealthRecord. In clinic I work, made decision forgo ePIP funding (not inconsiderable amount – $23K per annum I recall) due concerns usability ethics MyHealthRecord. This bites massively practice budget, issues MyHealthRecord seriously currently lure extra funding! Other places may MHR – certainly true Australian Digital Health Authority influence Primary Health Networks promote use MyHealthRecord. Some clinics adopted system lure ePIP funding (in fact many general practices dependent funding survive Medicare rebate GP consult currently running 50% AMA recommended consultation fee). As reports many practices signing their patients order access ePIP funding – always informed consent! You’d wise check see MyHealthRecord created already knowledge! ONLINE CLINICAL RECORD? CLINICIANS LINING UP TO USE IT

Do remember queues Apple Stores latest iPhone recent years? As discussed above, clinicians specialties heavy users clinical software notes. We pay significant amount each year software licence, annual IT expenses considerable. it’s worth it, ease practice. If MyHealthRecord useful effective existing clinical software, would current ‘opt out’ system press-ganging use tying ePIP funding MyHealthRecord use. Instead clinicians would queuing use (like Apple Store) even paying use it! Suffice say MyHealthRecord good enough – yet. This may change… In meanwhile, clinician donkey being goaded use system crude combination carrot stick. A shame, existing software works well open system replicates locations. additional risks MyHealthRecord concern (many?) clinicians… BUT WON’T BE BETTER HAVE ALL HEALTH INFORMATION IN ONE PLACE? MyHealthRecord designed ‘vacuum up’ health information – might health summaries GP, discharge summaries hospital, PBS data prescribing MBS-rebated item numbers doctor visit. Ideally would repository information organ donation, advanced care directives, immunisation pregnancy etc. At moment data spread many different unconnected systems. Some (like PBS MBS data) already being collected years. it’s tied together one place…until now. Health data big business. There now ‘honey pot’ data. individual level (your prescriptions, medical history, address, demographics etc) population level (disease prevalence geography, age on). Who wants this? Well – seems everyone! Not primary intended users (health care providers) hackers insurers. I am expert, plenty IT privacy experts – seem unanimous aggregating data one area unprecedented unintended consequences may considered. So called ‘secondary use’ health data MyHealthRecord topic seeing LOT airtime recent days, ever MyHealthRecord ‘opt out’ period started. This sanctioned usage, hacking…although another can worms entirely. This week electronic health records Singapore hacked – estimates 25% eHealth records accessed unlawfully. There similar tales Canada, USA UK. apparently ‘can never happen’ here Australia… My personal feeling risk hacking low. However risk unintended unauthorised (unexpected?) secondary usage health information high. As clinician I am concerned – current system – informed consent record used others. From can gather, ‘default’ security settings MyHealthRecord set allow usage. These who inclined can ‘rock down’ security settings MyHealthRecord – data far suggest 0.1% users this, perhaps reflecting fact many records exist being actively managed user. Additional barriers access internet being reasonably tech-savvy health-literate contributors. WHAT ELSE COULD MY HEALTH RECORD BE USED FOR? privacy terms conditions MyHealthRecord alarmingly complex default setting contents MyHealthRecord available users content uploaded. This many privacy experts scratching their heads..until realise Head programme, Tim Kelsey, record saying “noone who uses public service able opt out” Secondary use might include researchers, agencies police, courts, ASIO, Centrelink even health insurers. There information secondary use Govt here. MyHealthRecord Act includes authority Digital Health Australia disclose information law enforcement purposes, including: (My Health Records Act s70(1)) prevention, detection, investigation, prosecution punishment criminal offences, breaches law imposing penalty sanction breaches prescribed law; enforcement laws relating confiscation proceeds crime; protection public revenue; prevention, detection, investigation remedying seriously improper conduct prescribed conduct; preparation for, conduct of, proceedings any court tribunal, implementation orders court tribunal. These broad criteria allow wide range bodies access My Health Record data, necessarily being requirement warrant – primary records held healthcare staff, ADHA does notify clinicians (or patients) their records accessed. MyHealthRecord users can ‘lock down’ controls who can access their record…although overrides. This does require degree engagement MyHealthRecord order understand implications able modify security settings use. date 0.1% MyHealthRecords their security settings adjusted user – implying wither folk record don’t it…or lack technical health literacy manage this. Is informed consent? I am lawyer, suffice say privacy experts social rights lawyers raising consistent concerns potential secondary use.

I can speak my experience insurers employers, impact unwanted consequences their access health records. It uncommon receive requests access patients medical records (let’s say insurance purposes). We NEVER release information consent individual..and course consent itself nuanced contextual. I examples patients denied access military their insurance premiums loaded, their file contained reference ‘anxiety”. Never mind related specific, single espied (e.g. workplace conflict, school exams bullying etc)…instead info taken context another agency used. Can imagine insurers access MyHealthRecord? Either individuals populations? result individuals being disadvantaged due disclosure their medical history…or even association “Ah Mr X..I see live rural area Y, there’s prevalence alcohol use nicotine dependence, ischaemic heart disease. Your health premium higher lived city” Think I am exaggerating? Have read here – NIB chief executive Mark Fitzgibbon hoping private health insurance fund can permission .5 million customers access their digital health record, mounting privacy security concerns. Meanwhile ‘secondary use’ seems major goal Australian Digital Health Authority boss Tim Kelsey (who responsible similar scheme UK): “Kelsey repeatedly characterised scheme different terms. government’s intention “to harness power modern information revolution empower enable clinicians offer industry entrepreneurs innovators platform delivery services”, he said interview last October. “It’s creating industrial entrepreneurial opportunities great apps developers here; existing large vendors – engage public estate, transform experience citizens England [sic],” message Committee Economic Development Australia.” IS THIS PARANOIA? CAN WE JUST TRUST GOVERNMENT? Possibly. As stated above, central tenets health care based principles consent, autonomy, beneficence, trust, confidentiality. Suffice say many clinicians concerns implementation MyHealthRecord ‘opting out’ now. “precautionary principle” – can always ‘opt in’ later. Who knows, enough do this, system may actually fixed? meanwhile, consider Law Council Law Council does consider policy decision adopt opt model creation My Health Record supports further decision adopt opt model secondary uses My Health Record (i.e. health, clinical medical research). Rather, Law Council recommends case: is, default creation My Health Record individual lead policy caution adopting default consent secondary uses individual’s My Health Record. Measures adopted framework require ‘opt in’ use personal data secondary purposes ensure any use personal data consent, required legislation.” Confused? So I. Basically ‘opt out’ model raises concerns many Australians aren’t aware (or have) MyHealthRecord created may populated data. unlikely understand potential problems record, ‘consent’ record result in. default settings MyHealthRecord allow secondary usage…. So does former Digital Health Transformation Head recommend? He stated he would opt out! Former Digital Transformation Office chief Paul Shetler labelled rollout My Health Record “significantly flawed”, citing issues security model design barriers take-up. This damning former project lead…read here. HAVE I HEARD ABOUT MY HEALTH RECORD YET? This rubber REALLY hits road. MyHealthRecord ‘opt out’ system. And opt period already started. Didn’t see TV? Adverts Government? letters mail? ad campaigns? No …me – noone knows it! This unheard I feel strongly principles consent, autonomy beneficence hold dear clinical practice. WHAT DOES AN ‘OPT OUT’ OF ACTUALLY MEAN FOR ME?

All Australians MyHealthRecord created them…indeed may already record created knowledge fully understanding implications. scheme aggressively ‘marketed’ hospitals Government-sponsored events, clipboard-wielding smiling assistants signing people “s records available wherever are’ -it sounds good true…and course devil IS detail! Many records created empty ‘ghosts’ – clinicians failed see use system languished plenty people signed little clinical usage. With estimates with clipboard-wielding smiling assistants signing people up “s your records are available wherever you are’ -it sounds too good to be true…and of course the devil IS in the detail! Many records created are empty ‘ghosts’ – clinicians have failed to see the need to use it and so the system has languished with plenty of people signed up but little clinical usage. With estimates of between $1-2 Billion spent already-2 Billion spent already, Government cynically moved ‘opt in’ system ‘opt out’ one. Australian October 2018 opt system. If fail do so, record created remain 30 years death (or 30 years date death unknown). WHAT DO I DO? If wish ‘opt out’ do something. Only can opt (your doctor do you, those smiling folk Primary Health Network who might signed first place). Importantly ‘doing nothing’ means signed end opt period means record removed. That’s it. You ‘ll MyHealthRecord forever. So options decide opt are: Do MyGov online portal – https://my.gov.au/ Do Opt Out link – https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record Do Medicare telephone – 800 273 471 You Medicare card ring additional identity (passport drivers licence) do online. There course obvious difficulties don’t use internet, don’t phone, don’t drivers licence passport. Or English first language,ou disadvtanged disengaged health care aren’t tech savvy. One might think system engineered hard opt out? I do hope folk consider their options – do decide opt – effort now. WHAT ARE PROFESSIONAL HEALTH BODIES DOING? It depends who speak to! offical line seems peak health bodies support MyHealthRecord certainly see promoted Medicare. It is, course, somewhat nuanced. Most health bodies support safety, easy access contemporaneous notes security. We’d love see workable eHealth system. I do wonder f initial support faded system moved proposed ‘opt in’ current ‘opt out’ model…and politics accord Government Bodies may belie underlying feelings. Politics! Those who ardent calling MyHealthRecord may those gain access data, bear little responsibility collating curating it. medicolegal responsibility curating MyHealthRecord remains untested, GPs concerned them. additional burden, pressure discuss MyHealthRecord upload summary consultation already time-poor relatively financially-pressured dynamic. Tellingly though, RACGP supports condemns MyHealthRecord [ADDIT – statement appropriate questioned appears College DOES support MHR – pity, given problems ‘opt out’ ‘standing consent’. See comments end]. As individual doctors? Well – do talk. There online communities here clinicians discuss sort thing. Anecdata ‘Business Doctors’ reportedly ratio doctors ‘opting out’ vs ‘remaining in’ 0:1 (I data firsthand, hearsay) Online polls popular ‘GPs Down Under’ Facebook group consistently showing opt rates 2/3 3/4 GP respondents. Most folk recommend opting back MyHealthRecord issues addressed. WHAT DO CLINICIANS NEED? We can demanding mob, clinicians. interests mostly fairly simple – do right thing patient, maintain confidentiality, keep trust don’t do something say wont jeopardises above. In clinical practice, we’d love see: time monitoring prescribing reduce doctor-shopping problems drugs dependence (death, diversion, dependence)

secure messaging clinicians (let’s rid fax antiquated notion dictating letter, waiting week typed up, checked snail mailed out). We ensure health information handed pint discharge care (whether attending ED, outpatient inpatient hospital stay) – preferably writing avid misunderstanding. A secure system allow letters discharge summaries exists, utilised especially Public Hospital system. repository essential information Advanced Care Directives (this important, fw folk ACD. It’ minor miracles one..but wrongly MyHealthRecord doesn’t allow doctor upload – HAS patient. So already uncommon event likely rare system) genuine ‘opt in’ system: I think something support, allows nuanced discussion pros cons keeps patient centre control their information ‘opt out’ model anathema. electronic health record system easy use, portable effective existing primary care clinical software. Ideally online clinical NOTES system, SUMMARY. Why important? Because reading notes allows clinician understand nuance background decisions made previous clinician. tis important can guide further decisions, far simple summary. maintain confidentiality security, absolutely prohibit secondary use ‘big business’. Maintain trust currently enjoyed profession – I fear lost poor implementation current MyHealthRecord… Interestingly GP clinical software evolving way, likely inclusion shared summaries health info, recalls results integrated clinicians software AND smartphone tablets used patient. A true partnership shared health info. All may MyHealthRecord even redundant. WILl IT BE ASIER IN AN EMERGENCY? Not really. We keep hearing line being trotted pro-MyHealthRecord advocates. It sounds right doesn’t it? Enrol now – MHR life! Look certainly true LIKE ready access health information crisis. here’s thing – involved car crash, structured approach resuscitation – roadside Emergency Department – designed focus management immediate threats life treat them. History IS important – comes track… Most times can collateral history form bystanders, friends, family..or notes. If particularly complex history allergies, would well carry list medications list conditions wallet purse. MedicAlert bracelets especially useful. And always ‘In Case Emergency’ ICE function smartphones, accessible lock screen….you can read configure divide ‘Further Reading’ below. Bottomline, clinician unlikely spending time logging MyHealthRecord search list PDFs, resuscitating! Moreover any clinician worth their salt taking their history relying notes. inaccurate date. GIGO! IT’S NOT THAT I DON’T TRUST YOU DOCTOR, BUT I WANT TO MAKE MY OWN DECISION BRILLIANT ! That exactly about…making OWN decision..not being swayed doctor, having record created automatically Government. Most importantly YOU having control YOUR health record. Feel free use MyHealthRecord – aware involves tightly screw security settings access, default engaged. I think very people actually effort do requires degree motivation, health literacy IT skills. Be aware information available (clinics sent system willow uploading) adage ‘garbage in, garbage out’ applies. record good YOU upload curate. think lea manila folder health info…but one may less secure online tucked away wardrobe OR held clinic. Think hard NEED record online – unlikely life emergency, wont available many users (including travel overseas)and unprecedented potential secondary use – agencies Government authorises…or unauthorised use. STILL CONFUSED. WHAT SHOULD I DO? Don’t panic – October 2018 ‘opt out’. And can always ‘opt in’ later concerns addressed. I would suggest speaking friends family this, well trusted health professional. Ask always gain opting – those telling opt out! Remember ultimately BEST health outcomes going partnership clinician, honest open communication, underpinned principles confidentiality, trust ‘do harm’. Ultimately YOUR decision whatever decision works you. Your doctor support this. I conflict interest declare. I note Labor Liberal Governments involved implementation eHealth system (formerly Patient Controlled Electronic Health Record, PCEHR now badged MyHealthRecord). My opinions mine alone do represent those Kangaroo Island Medical Clinic. At stage Clinic uploading summaries MyHealthRecord does receive Government ePIP funding. commentary here made good faith based my understanding MyHealthRecord. I am happy declare I opted MyHealthRecord time. I first line ‘opt in’ my concerns addressed. Individuals their judgmental pros/cons system understand I support their clinician regardless. || || clinic, medicine, inform, notes, x-ray, mri, healthier, public, servant, illness,
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