I’m at the second face-to-face meeting of the Consumer Consortium of the National eHealth Collaborative, a gathering of 180+ stakeholder groups working on the consumer engagement aspect of health IT.
Everyone talks about PHRs as Personal Health Records, but one participant from Brooklyn (I don’t have his name yet) spoke about portable health records. My ears went “Ding ding ding ding!” like a prize bell on a game show.
The point of it – the benefit to the user – is that it’s portable. You can take it with you to any doctor or clinic, so the information is where it’s needed: with you.
What do you think?
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Hi Dave,
How about this technical solution:
People own their own data – and manage it the same way they would a web domain?
Here’s how it works:
1. Person submit check swab, get login, pwd from one of several biological domain registrars. (their DNA is used to create for them a unique domain on the web – like a biological DNS service).
2. Individuals set up user accounts and can control who has access to any of content they place behind their personal biological domain.
3. If they loose their password – they’d need to resubmit a DNA saliva sample to reset it (which is a pain in the neck).
However – it provides the foundation for a universal health record that is under the individuals control, can be deployed unilaterally a person can prove and reclaim ownership over the dataset throughout their lifetime.
Then people could choose to work with entities that agree to audits to prove authorized use. Also – written consent could evolve into realtime consent!
Here’s more info on the solution
http://slidesha.re/mwHSzy
Thanks
Alice
Well, Dave, that’s the theory, but thus far it hasn’t been borne out by the facts. Virtually all PHRs are tethered PHRs, meaning they’re tied to a specific provider or payor portal which shares out some info that’s in the full EHR. You switch payor or provider networks, your data doesn’t follow you. The demise of Google Health may be seen, in part, as an indication that there isn’t a real market (yet?) for an untethered PHR.
Yes, David, I meant as the *purpose* of the PHR movement… something that conveys more value to the consumer/patient.
Fair enough. Because as others have noted, we have the technology; we just don’t use it. The key issue to be addressed is, of course: Who pays? The technology has been marketed directly to consumers in this country in the past, and we’ve seen how little uptake there has been. Also, if it’s a consumer gizmo, then most providers still won’t look at or trust the data. Some day, if and when we get to Stage 3 of Meaningful Use, and if the criteria don’t get watered down too much, many if not most folks will be able to download all EHR data into their PHRs, and EHR data will be interoperable so that you won’t have to carry around a card, or a chip, or whatever; if you are conscious or have ID on you, then your data will follow you (or, rather, will be accessible by any health care provider who’s hooked up). It’ll be in the cloud. Like Joe Bfstplk in Li’l Abner who always had a cloud over his head.
Nice :-) I already liked the alternative “Participatory” Health Record, although that word is unpronouncable. ;-)
Recently I started using xHR.
Platform-independent health records are exactly what is needed. Anyone in the Linux-open source community working on this?
Hello Ray,
Well, in the US the Veterans Association has developed Open Vista (http://sourceforge.net/projects/openvista/), a PHR system licensed under the GPL (GNU General Public License), so it’s definitely open source, and it’s been thoroughly used in the US, keeping hundreds of thousands of electronic patient records.
Other organizations like the Continua Alliance are also looking into defining a standard for the interoperability of EPR’s (moving further than just interoperability of medical devices).
There must be more initiatives like this out there.
Best regards.
Most mothers will remember carrying small booklets to well-baby appointments, with basic information such as weight and height being recorded, and most critical, with immunization records. These are certainly the most basic “Portable Health Records” and reflect a great willingness to maintain these records over many years. Whereas these records were simple, they were typically accepted as legal proof of immunizations for school purposes. When a family moved, the next pediatrician or school nurse used these “patient records” quite happily. How hard would it be to encourage more of the same in this mobile world?
Dave,
*portable* health records (but not in electronic format) were invented a while ago! This is how it works: It’s basically always wearing a necklace with some very basic medical information in case of emergency (or “break glass” situation as it’s known nowadays): blood type, any serious allergies, e.g. penicillin, known chronic disease, e.g. diabetes, CHF, etc.
In countries like Switzerland they’ve done the same but electronically. All Swiss citizens or residents have (and tend to carry) a “social security chip card” and in the chip they not only store their id number, encryption keys etc., but some actual medical information for “break glass” or emergency situations. Say, a Swiss person has an accident. Any doctor or hospital where they’re taken to has a simple card reader & software to access the information on that card, thus what’s in the chip becomes a *Portable* Health Record.
(More on this system… If the doctor reading the card has been previously authorized by the patient to have access to the full *personal* health record, then this information will be retrieved from some government central database. The patient has full control of what’s on the *portable* part and who has access to what parts of their entire medical record. As you know, this is technically feasible and in fact it’s technology of yesteryear. Implementing such a thing is “just” a huge change management problem :( ).
If it has cloud-based storage with a web interface then it is already a portable health record – as long as you know the userame/password and have access to the Internet (e,.g. a smart phone will do) your health data goes where you go. If the interface doesn’t support this type of accces then it never was a PHR to begin with, either personal or portable.
I’m thrilled with how much discussion this has produced.
I agree with Laura – if it’s cloud it’s portable.
I guess my motivation in posting it is to provide a clearer PUBLIC CONCEPT of what PHRs are about. In Minneapolis last week, at the HHS/ONC regional trainings about health IT, one speaker (from Colorado?) noted that people are starting to “get it” about data sharing between providers – one elder was asked by a doc to get a test done that had just been done recently, and realized that she wanted the information to be PORTABLE.
I think we are starting to get at the meat of this issue – control. To use older (but still relevant) terminology this issue can be viewed as client/server side. When it is client-side users have a copy of their stuff, like using Outlook to download your email. When it is server-side, like Gmail, you don’t have a copy that resides on your hard drive.
The move to the cloud is inevitable. Soon desktops/laptops/tablets won’t ship with any internal storage capacity. The key for those of us in ehealth/patient advocacy is to make sure we don’t lose control of our data. A system like Dropbox is a good compromise – as long as you can have your data on a client-side storage system, even if it is an external, portable USB stick or hard drive then you have some control. Either personal or portable it’s all about access.
Hi Dave, we’re completing development of our portable patient-focused personal health record. It’s called the MedKaz® System. It complements provider-focused systems whether paper or electronic. We expect to start our pilot study shortly. It does all you want — and then some! Our website, medkaz.com, describes it more fully.
We aggregate the patient’s lifetime health record on a flash drive the patient owns and controls. It contains copies of the patient’s records from all their providers, whether the originals are paper, electronic, or images. We use servers for flexibility but do not store patient records on them. They are stored exclusively on the patient’s MedKaz, thereby avoiding the security and privacy issues that trouble consumers.
Providers can sort, search and read their patient’s records electronically so they can avoid making mistakes and ordering unnecessary tests. The provider updates the patient’s MedKaz after each visit so it always is current. We pay them to do so.
When the patient gives their MedKaz to their doctor, they are performing the networking function — so there is no need to build elaborate and costly electronic networks.
Moreover, with the patient’s permission, the doctor can access and read any record from any other provider and thereby coordinate his/her care with the care provided by the patient’s other doctors.
I should add that our unique business model supports our breakthrough system.
Also, if any doctors, especially PCPs who keep paper charts, would like to participate in our pilot study, we’d love to hear from you (our contact info is on our web site).
Hi dave. I totally agree with the benefits of PHR. I really think that such an thing should be implemented with some sort of a standard so that for instance one could inject his record onto any service and immediately benefit from those services. This can only be achieved if PHR is a well defined standard.
Disclosure: I am CEO of a PHR company.
Opinion: We are highly ranked; I know of no better PHR.
Fact: Our PHR is the patients’ version of the physician EHR and communicates using Federal standards for HL-7 and CCD, etc. with hospitals, clinics, laboratories and physicians digital records.
We are encrypted like an ATM. Breaches of security (I know of none) are overwhelmingly likely to be human error, not technical.
How often are health care decisions made—at hospitals or by government—without the patient at the table? To participate, patients must have the tools: a software platform. And it is free.