Big news from Down Under: the Sydney Morning Herald reports that a group of fifty consumer health advocates has unanimously backed an “opt-out” process for enrollment in electronic health records, reversing their previous position.
The issue is whether by default all patients have an EHR. “Opt-out” means you’re in by default – your records will be stored electronically – and you can opt out if you want. “Opt-in” means you do not have an EHR unless you specifically ask for one.
The group, the Consumer Health Forum, cites evidence from the neighboring country of New Zealand, in which only 100 people out of a million opted out. They also cited the expected improvement in care and reduction in cost, two patient benefits which outweigh the privacy concerns previously expressed by the Forum.
The government’s Ministry of Health does not agree, and still advocates opt-in. “‘The government firmly believes staged implementation, including ‘opt in’, is the right way to build confidence in e-health records for the ultimate benefit of patients,” said Health Minister Nicola Roxon.
e-Patient impact: For the e-patient movement this hints at a continuing cultural shift, which may favorably influence adoption of electronic medical records, which strongly support participatory medicine. (As SPM President Dr. Danny Sands once said, “How can patients participate, if they can’t see the data?”)
In Australia as well as the US (and elsewhere), privacy advocates have long expressed concern about abuse of private data in these systems. This concern, understandably, impedes adoption and slows growth. An attitude shift among those advocates may foretell a broader shift.
The timing in the U.S. is auspicious, as we continue the work of computerizing American healthcare. A significant consumer push is expected in September, and this shift in the wind is quotable fact: it appears that another responsible party has shifted to preferring the benefits of information being available at the point of care.
We’d welcome contact from any members of the Consumer Health Forum. Comment here, or email to blog at ParticipatoryMedicine.org.
Another hat tip to the daily ICMCC Newspage (subscribe) for this one.
In Australia, nearly everyone already has an EHR. I haven’t been to a doctor’s practice or hospital in the past 10 years where they didn’t use EHRs of some sort for everyone. What hasn’t happened yet is the connection of those records across systems and places. If you change doctor offices or want to share information with other health professionals, they generally still have to put your record on a CD or USB stick and mail it to the new doctor to upload to their system.
And, of course, patients don’t have access to these records by default.
Great to hear from you, Lena.
So, for US readers, the thing Lena notes is missing (the connection of those records) is what we’re calling HIE – Health Information Exchange. It’s a big-deal part of the health IT roll-out that’s now under way.
Oh, I forgot to add – most pathology records are already shared however. There are only a few pathology service providers here. I went to a new doctor and was surprised to see she already had my previous pathology results in my new EHR.
Funny I dont know of any electronic record system and I live in NZ… so we dont opt in or out.. its talked about and only a few primary health care places have it… probably about 10.. so for a population of 4million dont think they can be considered the norm yet
I’d love to hear more from Brenda or anyone else in that region about this – what were they talking about, if Brenda doesn’t know of such a system? Anyone?
Dave, Our laboratory can send the results directly to the PCP or GP’s office, instead of the 3 day snail mail that it was a couple of years ago, yes our notes are put onto the GP’s computer instead of handwriting… but any interaction between institutions is by paper…
Patients are still considered idiots, and its a real task to get notes.. I get blasted every time I ask for my results, by the lab staff…yet it is ME that checks them and notifies my consultant/specialist.. and still waiting after 12 yrs for my GP to get back to me that I have abnormal results. therefore I stick to my story that we are not on the EHR system and certainly not HIE, except for some hospitals can now send Xrays to each other but not all. Hospital notes are still handwritten, or then ‘dictaphone’ letters to be typed and sent to the GP.
IF I go to my own hospital for trauma treatment they wont do anything in the ER, but read my 6 vols of notes and say I am too complex, yet that has nothing to do with the scratch on my hand that needs treating immediately cos of complex body.. and cos I am the only one there is no medical team for them to consult.. so I remain in the gap between the brick wall and rock face. I then have to become the uncooperative/stroppy/demanding patient.!!!! as participatory medicine aint got down here YET
> participatory medicine aint got down here YET
Well there’s no geographic exclusive on this :) and I imagine there are SOME people doing it, more or less, and as in the US they just haven’t been heard from yet.
Do you know of any patient blogs down there?
We’ll be happy to help spread this thinking. 18 months ago everyone said “Yeah well it’s only in America,” now there are e-patient speeches all over Europe, and those people didn’t just BECOME e-patients – it’s just that nobody was talking about it.
Join the society (it’s just US$30/year, or scholarship if you need it) and start some trouble on the listserv! Bring friends!
Send doctors, too – there are videos of speeches on my personal website, including a 73 minute joint keynote with my physician, SPM co-founder Dr. Danny Sands.
People’s assumptions live on in dialog, and the content of dialog shifts when people see and say new things. This is how it starts. Rock on.
Dear Dave, I am your “friend”… and would luv to be with the society.. but chronic disability means that the cats eat porridge and I dont have the $60 [NZ] to join you.. so I follow you and fellow participants and spread the word as I can.. I so think participatory is better than the expert patient that was the theme back in 2001, and so I presented a paper to fellow nurses in 2002, and the stoney response had me on stage wanting to scream at them.. so I have become the discerning patient… I wont let any nurse near me.. I do things my way… and ready to do battle if I think it will help the next patient coming along…Doctors down here apart from that rare 1% are indoctorinated with paternalism big time.. and tho it was knocked out of nurses in the late 80 -90s it seems to have returned.. as for those who manage the hospitals.. If I report the saying of the new managers who happend to see some patients wandering down the corridors in their p.js and we know all mens one gape!!! the order went out no patient to walk down the corridor without a dressing gown and shoes, it looks untidy!!! admittedly a few years ago now, but they are still stalking the hospitals ;)
> the cats eat porridge
And that’s why the founders set a policy in the fine print at the bottom of the Individual Membership page:
“The Society for Participatory Medicine will grant a partial or full scholarship to any individual or Innovator Organization who demonstrates involvement in participatory medicine for whom the membership fee would be a burden.”
So if you want to join, by all means do. Holler if you need help.
Re stony response: all social revolutions start that way. The first to speak up seem crazy, because, of course, NOBODY has ever said such a thing. Then sometimes they get insulted, and then some people say “Wait, maybe there’s something to this.”
Our colleague Susannah Fox recently described this progression as “Crazy. Crazy. Crazy. Obvious.”
In my public speaking I find it most useful to appeal to people’s best instincts, not cast blame and shame.
I’m curious to know what sort of data visualizations are available with commercial EHR software. Can a patient easily look at a timeseries of the variance of their weight, for example? I a made one for myself for the drugs I’ve been prescribed over my life – and especially for Crohn’s Disease. It makes my health history easy to look at and fast to communicate. Is this sort of thing going on anywhere? (My example can be found on the font page of this blog: diyehr.com.