The members of Personal Health Records PHR Work Group Members – CCHIT Certification Commission for Healthcare Information Technology were announced today, click on the link to see the list.
It’s a pretty impressive group, myself excluded :), and I look forward to participating. Because CCHIT handles proprietary information, I won’t be blogging about my volunteer position with this group here.
CCHIT operates its own web site which includes opportunities for public commentary, and it also operates the EHRDecisions Blog, which I subscribe to.
So, what's the interaction between this group's work and other AlphabetHR standards groups? Competing, subset, complementary, other?
Kudos on the co-chairmanship.
I looked at the list of members and I am surprised that for a PHR certification commission you do not have a single patient representative.
I know quite a lot of the members and am very impressed with their expertise but I really think there should be real representation from the pure patient side. That is the real difference between participatory medicine or healthcare and patient-centered healthcare.
I would also venture that if you were actively looking for patient involvement you would benefit all the entities trying to implement PHRs. Patients are currently NOT buying into the PHR frenzy because no one has asked them what they would like and what are the issues that would stop them from using such tools. I would refer you to Keith Schorsch's Healthcare Blog post on "Google Health and the PHR: Do Consumers Care?" PHR have a great future if they get embraced by the end users. It is time to bring these end-users as equal partners at every decision level, starting with the certification commission for the tools they are supposed to use!
If you were ever preaching to a choir about anything…..this would be the topic for me. I've been involved with CCHIT for almost a year now, as a very openly patient-centric participant. The PHR Workgroup is brand new this year and will be different in nature (of course) from Workgroups certifying EHRs. As I mentioned in my post above, I have to limit what I blog about since the content of what is being planned is owned by CCHIT. Stay tuned, please :).
I actually disagree with the statement "Patients are not buying into PHRs" especially as written (definition of PHR? Which kind?). Take a look at this post which talks about the adoption of patient access in systems where patients are getting what they want – involvement of themselves and their families in their care (it's high).
Also please check out both my post and David Kibbe, MD's posts on what Google Health means in terms of the transformation it will bring. I think there's a deeper question than, "Does Google Health give patients what they want today?" It's something along the line of, "How is Google Health changing patient expectations about what they should get from the care system?"
Lastly, back to the choir thing, here's a place I visited where patients are equal partners if not more, and PHRs are being designed with them as such. I'm opting in to this.
See what you think and post more,
To your question about standards, in my opinion, complimentary. This is because the requirements as published are functional requirements. They say things like, "A system should present a medication list to the user." The don't say, "using this specific codeset…." The focus is on supporting EHRs that facilitate the outcome of excellent health care. CCHIT has been cited as one of the successes of our government's work in promoting health information technology (and not everything, as you know, has),
I should have said "the Kaiser implementation of the PHR notwisthstanding, patients are not buying into the PHRs" 🙂
There are NO discussions of the 2 main external and commercial sources of PHRs (HealthVault & Google Health) on the ACOR eCommunities. That is certainly not a sign that ePatients are wildly embracing these 2 offerings.
I absolutely believe that both companies should have explained in depth and openly to the public what these 2 services are offering and how they are dealing with the completely justified fears that end-users have for the privacy of their health data.
Let's forget about HIPAA, CCR, PHR, EMR, EHR, and the countless acronyms that we live with. People want to feel secure and it can only happen when they are getting satisfying and easy to understand answers to their understandable requests for clarification.
Gilles PS – I didn't mean to imply that you should stay tuned here to see what CCHIT is doing. I am a volunteer for the CCHIT organization – I encourage you to bring your ideas to them. Just wanted you to know that I share your philosophy. Hope that's more clear…Ted
Did a blog entry today at Health Management Rx and *almost* included the line (I hope Ted Eytan is on this task force…).
My faith in the cosmos increases daily…huge congrats and I now feel much better about the discovery potential of the group!
Gilles – Everything you said 🙂 In terms of the companies explaining or being compelling to patients today, I am going to go out on a limb and say maybe it's because they don't know how to … yet. Both don't provide care, but, hopefully they will learn what it means to do so, and they will get better. This can come from going to the Gemba as they say, understanding the patient experience, and working with people who do, and who have provided for patients in the online and physical world. I think what you're saying is that you're willing to teach.
I think the same consideration (directive?) should be provided to the health system – it doesn't know how to be patient and family centered …. yet. But it should learn. And people are willing to teach,
Nice post with thoughtful wisdom on the promise and challenge that this could be. There is a special PHR Advisory Task Force, that will manage the scope of what the Workgroup is responsible for. Thanks for caring that this happen right, hope you are managing DC well 🙂
The voice of the working group needs to be audible at the task force level.
The WG needs vision as well… see you in Chicago.