An essential aspect of participatory medicine – and Federal meaningful use criteria – is patients having a copy of their health data, so they can (a) understand it and (b) take it wherever they want. That includes radiology images.
This is not a new issue here: three years ago our Jon Lebkowsky wrote here about how internet visionary Doc Searls had a serious medical mishap, during which his ability to make a crucial decision was impaired because he couldn’t share his scans with another doctor.
Now, the Radiology Society of North America (RSNA) has begun what appears to be a real consumer-based image sharing project. From the magazine Diagnostic Imaging:
RSNA Image Share, the network designed to help patients take control of their medical images and reports, has enrolled its first patients, Radiological Society of North America officials said.
The network was designed to facilitate access to imaging exams for patients and physicians, potentially reducing unnecessary examinations, minimizing patient radiation exposure, and enabling better informed medical decisions.
The full article lists the five hospitals that are participating in the project.
Separate from this, I know of at least three systems that already let you upload your images –
- iCloud WebPACS
- HealthVault (3 minute YouTube on how to do it)
- Merge Healthcare’s Project Honeycomb (newly announced, not yet available)
Anybody know of any others? Comment below. Any personal experiences?
A personal note:
My own hospital gives me – free – a CD of any radiology image I want. That’s awesome. BUT, it’s not the full resolution in their system, and the software they provide is pretty stinky: it looks like something developed in 1997 – hard to figure out, and clunky to use when you do figure it out.
Why should the software be so out of date? Because we’ve never had the ability to (easily) use other software. I’ll predict that when we really can have our data – our families’ scans – there will be a ton of new software, to help us see the data.
A guru’s view:
Fittingly, this brings us back to Doc Searls, who for years has been advocating VRM: Vendor Relationship Management, in which the consumer (you) is in control of relationships. It’s the opposite of CRM (customer relationship management), in which the vendor calls the shots. You can see why, after his encounter, he wrote about the patient as the point of integration for the data.
A glimpse of the new ecosystem
Personally, I can almost taste it. It’s not here yet, but as a lot of data starts to become free – when there are 100,000 consumers who want better software – developers will find a market for good software, and doctors will have a competitive reason to use it. For the first time a real consumer-based ecosystem will start to arise, and the business of healthcare will veer toward the patient. And that’s a good thing.
Hi Dave, Very relevant post, as always! During my husband’s bout with cancer, we had too many instances to mention that if we DIDN’T have his x-rays and reports, he wouldn’t have received the immediate care he needed at the time. My natural preference is to avoid conflict if at all possible, but I had to beg and threaten to get his records. What a lot of wasted effort!
If all patient data was easily accessible, more patients would become active participants in their healthcare. Participatory medicine is here to stay…it’s time that everyone acknowledges it and moves to improve the care delivery in our country. Jonena
So, Jonena, are you now thinking of putting records in a cloud system like this??
I’m going to – heaven knows what glitches I’ll run into but now’s the time to find out. I’ve got my chest scans and arm and leg and shoulder x-rays; my wife has some scary foot-bone x-rays… better to know now.
Medscape founder Peter Frishauf just had an episode, too, where HE had better access to his images (through WebPACS) than the same hospital’s docs did, in-house!
I’d say this is “justifiable cloud-ifying in self-defense.”
Hi Dave,
Yes, I think we need to walk the walk of participatory medicine which should include using cloud-based technology to house our records.
I’d love some help investigating what system to use. One that will be around for a while…
If I were younger and well funded, this would be the perfect business for me to start. Not that I’m totally nuts, but I do like starting and running companies that are out there and in front of the pack. It makes life so much more interesting!
I am a strong supporter of releasing radiology reports directly to patients. Not only is it ‘the right thing to do’, I think it will go a long way to improving the collaborative environment between radiologists and clinicians. Let’s work together to help overcome fear and misunderstanding.