Australia’s plans for the modernisation of My Health Record and a national health information exchange was again the hot topic for Pulse+IT this week, and our friends Louise Schaper and George Margelis over at the Pulse podcast also got in on the action.
Louise and George had a chat to Australian Digital Health Agency chief digital officer Peter O’Halloran about the plans for an HIE and how he envisioned a health sharing future. You can take a listen here, and ADHA has also helpfully posted the full recording of the presentation in Canberra a fortnight ago that outlines the agency’s plans. It’s interesting stuff, so have look.
We did some polling last week on what Pulse+IT readers thought about the HIE plans. Most were in favour, with about 75 per cent voting yes. There were a couple of really good comments that we highlighted in our little bit on the Pulse pod. We were particularly interested in two of the comments, one pro and one anti. An anaesthetist said patients expect data to be shared and that they’re often surprised that their clinicians are still asking questions that they’ve already answered.
Another, though, mentioned that except for allergies, there was almost no clinical situation in which instant data availability or instant medical history availability would change the course of that patient’s recovery or death. They also mentioned that as a clinician, there is the potential for data overload and that will not help. This is something that Louise and George took up on the podcast.
As Australia moves down the route of preparing legislation for what ADHA calls sharing by default, which will see it mandated that pathology and diagnostic imaging results be uploaded to the My Health Record, we took a look this week at what is happening in Ireland, where a new information sharing bill has been introduced which will have a “duty to share” health information requirement.
This bill will require that healthcare providers send a patient’s record to a new provider, and to inform patients of what they are doing with their records if they stop provider care to them. It also sets up a requirement that healthcare providers share a certain subset of health information with the government to allow it to establish shared care records for citizens, as outlined in Ireland’s recently announced digital health framework. This will require healthcare providers to share information with the government, the patient and other healthcare providers, and is part of Ireland’s responsibilities under EU data sharing laws under the European Health Data Space.
The bill also allows for sanctions for those that don’t share information when requested, just as the US, which has brought in regulations under the 21st Century Cares Act to make information blocking, or a refusal to release patient data by either a healthcare provider or a software vendor, illegal, and there are sanctions there as well.
Ireland’s bill will also require technical changes to software, as the new law will mean that GPs will have to transfer patient records if that patient moves practice, and we hear there are some grumbles from vendors about this, and about the administrative burden. New Zealand has a system that is creaking to its end, called GP2GP, which was set up as an electronic way to share patient records when patients move practice, but there’s no similar system here. Fax it is.
We wonder if Australia’s legislation for sharing by default, due at the end of the year, will go as far as sanctions, which would surely raise the ire of GPs in particular, but at the moment, the policy is only slated for sharing with the My Health Record. However, the legislation underlying My Health Record is being touted as a rock solid basis for the sharing by default policy and for the HIE, so who knows.
Then again, we still haven’t seen any legislation introduced for the secondary use of My Health Record data, which was always part of the plan; secondary use meaning de-identified data being made available to researchers and universities as well as restricted use for commercial reasons, but also to the government for population health reasons. The Irish bill, on the other hand, is going to cover this very thing. It’s an interesting piece of legislation, and it’s worth having a read.
Also, this week, Ireland released a draft of its roadmap for its digital health framework or strategy (we think by mistake). It’s often said Ireland is way behind the rest of Europe in terms of digital health maturity but with the framework and roadmap they are playing catch up in a hurry. It’s a packed line-up, and it’ll be fascinating to watch over the years as it rolls out.
Meanwhile, New Zealand had a hell of week, what with Health Minister Shane Reti confirming that the Hira health information program is officially on ice following the $330 million in cuts to digital health in the recent budget. The first tranche of initiatives were complete on June 30, and there’s no more money in the bucket for the next two.
This has caused a bit of despair in the digital health industry in New Zealand, but there are supporters of the move as well. It has always been a struggle to explain exactly what Hira is apart from a collection of digital initiatives. There’s the New Zealand My Health Record, where people can go and find their immunisation information, some very valuable interoperability work and the hosting of the NZ Terminology Service, but as a whole, the concept of Hera is still a bit vague.
Its purpose is perhaps quite rightly under review in resource-constrained New Zealand, where the new government seems to be dead set on implementing an austerity-led reign of terror, resulting in the sacking of the Health NZ board and its replacement with a single commissioner in Lester Levy, a National favourite, to save $1.4 billion over the next year.
While a lot of attention has been put on what that means for recruitment in the hospital sector, there are also questions about what it means for GPs, who are up in arms at the moment about the low rise in the rate capitation that they’ve been given. Dr Reti, a GP himself, has a lot of explaining to do.
So in Australia and in Ireland things are charging ahead, not so much in New Zealand. If something can’t be shown to be financially viable, it’s probably going to be put on the back burner. Hopefully progress will still be made in the interoperability sphere, where New Zealand is a world leader, but for health information sharing with patients, who knows. More on that very hot topic next week.
That brings us to our poll question for this week.
Do you think healthcare providers have a duty to share patient data with government systems?
If yes, should there be sanctions against organisations that refuse? If no, do they still have a duty to share with other healthcare providers?
Vote here and leave your comments below.
Yes. As with the USA, set a clear date and allow time for preparation. Nothing focuses the mind like a market signal.
Yes, and also fines for govt if they refuse to share data back to patients and their health care providers
Yes – If government pays for the care it should be given the data, subject only to privacy concerns, ensuring those concerns are not contrived. Data cannot be withheld for selfish or commercial reasons
Yes – They definitely have a duty to share with other healthcare providers, perhaps sanctions go too far.
Yes – Consumers have a right to access and control their data, and the only way to ensure that happens is to force providers to share the data.
Yes if for continuity of care
No – A HIE rather than a central database. Large central databases are too tempting and are open to misuse and theft. I don’t trust anyone to hold that much of my most sensitive data especially a government with their motives.
No – Duty to share with other healthcare providers involved in the patient’s care but not Government
Yes – I believe we can incentivize organisations to share information patient information through favourable funding agreements etc. The outcomes for patients are clear where the most up to date information is available for their care
Yes how can they refuse it’s not their data?
Yes. Less subsidies or access to support.
Yes. No public funding.
No – Fundamentally, the patient should have the say over what should be shared and who it should be shared with. The patient may wish to deline the sharing os some information or to share only some information.
No – Only at patient request ( unless otherwise legislated eg mandatory notifications of infectious diseases etc)
yes, for continuity of care but in this era it could only be efficiently via Information systems.
yes there should be sanctions on organisation who refuse
Yes – If it is mandated that information is shared, there has to be a consequence for not doing this.
Hell yes!
Yes – But only if patient allows it to be shared. Its the patients data NOT providers and not governments
No, a patients right to privacy must come first. There should be no sharing of confidential information without patient consent.
No – Certain conditions may legally require healthcare providers to report specific data to government agencies, such as communicable diseases, child abuse, or threats to public safety. Healthcare providers have an ethical obligation to maintain the confidentiality of patient information. This is a cornerstone of the patient-provider relationship and is essential for maintaining trust. Child abuse and FDVSA need to have parameters that support appropriate sharing of information and not the current duty to share all.