Been doing some exploratory research on the PHR (personal health record) market, looking at the various suppliers of such platforms, their offerings, method of delivery and all I can say is what a mess.
What’s the problem?
Here’s my short list:
Lack of consistency in what is offered, and more importantly, why? No clear descriptions as to why a consumer should take the time to fill out all of the information – what should they prioritize?
Too many PHRs are tethered thereby limiting a consumers ability to take the PHR with them should they change employers, insurers, healthcare providers, etc.
Lack of information/connections to healthcare providers to get one’s records into an untethered PHR – automatically. Virtually all of the solutions today want you to transcribe that information yourself.
Of the three above, the last is arguably the biggest one, which to some extent is related to the second issue listed.
Presently, a consumer has to spend far too much time filling out various forms/templates in a PHR, and that is just to get started. Have yet to find a PHR that can, today, automatically bring in your records from a healthcare provider, or claims information from your insurer. The only way that this is being done in some fashion is via tethered PHR systems, such as that offered by Aetna or patient portals that one can find at many of the more advanced and usually larger care providers such as hospitals.
This leads to the main problem for the nascent PHR market – both insurers and providers, and to a lesser extent employers want to control the consumer relationship. This puts them at odds in sharing information and subsequently populating a consumer’s PHR, by providing data to a competing system. This problem is only exacerbated when one looks at independent PHRs such as WebWD, RevolutionHealth, Cap-Med, HealthString, Medem, etc., where these independents are seen as an intermediary thus leaving insurers or providers one step removed from the consumer. Don’t see insurers or providers readily passing over consumer information to these independents without some serious potential return.
But maybe we can kill two birds with one stone.
A lot of money is being poured into RHIO and HIE initiatitives. While these are certainly noble efforts to date, most have or are failing. The most common reason why, lack of a self-sustaining business model. So I’ll throw this idea out there: Why not use the information that RHIO/HIE will have to allow a consumer’s PHR to be automatically populated for a small transaction fee similar to an ATM fee. It does not have to be onerous, it could be subsidized in some small part, it will allow for an RHIO/HIE to have an annuity stream and an untethered PHR will be able to provide an extremely important service to its customers.
Seems to make some sense to me, what do you think?
Your comment: “most have or are failing” is intellectually and factually wrong. If you look at the raw numbers, the three highly publicized RHIO closures add up to a rounding error. We (the collective “we”) are doing things we’ve never done before. When you do that, you make mistakes. The goal is to learn from your (and other’s) experiences and improve over time.
As for connecting PHRs to RHIOs, most credible vendors can do that now via a CCD document. Individual patients will never pay for it. It must be paid for through the patient’s payor. The end game is that the payor is tightly coupled with the RHIO effort and is contributing data to the collective, which will ultimately make it’s way into the PHR.
Thanks for the critique RHIOboy. Based on the research I have done to date, there are very few RHIOs that have gone live and of the few that have, there has been a disproportionate amount that have failed. That’s not to say others will not learn from their mistakes, hopefully they will and RHIOs that are now getting ready to go live will and will have a self-sustaining revenue model once their original grant money runs out.
As for CCD, this standard just got finished its public review and comment period (ended July 18th). Found the following on the Mass. Medical Assoc website, dated July 25, 2007:
“There is no means by which CCR can easily be transformed into CCD (and vice versa), somewhat limiting the utility of this harmonization. CCD is a new standard with HITSP support but has yet to penetrate either the ambulatory or inpatient EMR marketplace. CCD, like CCR, captures a snapshot of patient information and could be used for a PHR or to create a portable snapshot to improve continuity of care between providers.”
So I do find it hard to believe that this is actively being used by anyone today. Would like to learn more if you have some real examples.
One last point, since your company is in the PHR space, you may want to get listed over at myPHR.com
Patient Privacy Rights is the nation’s leading medical privacy watchdog organization (www.patientprivacyrights.org).
We do not advise anyone to use a PHR yet because they are not safe.
The big problems with PHRs is they are designed to have NO legal or ethical protections — so consumers have no way to control who can see and use the data they enter into them. Your data is EXTREMELY valuable for sale to insurers and employers and others that use it to discriminate against you.
PHRs are designed to facilitate data mining by many technology vendors who offer these producys (many contractually have the right to own and use the data you enter, their business model is to sell your data), by the insurers who are offereing them “free” to enrolees (Aetna for example–you would be crazy to give an insurer any additional sensitive health information about you), and by large employers (the Dossia data base of ‘free’ PHRs for employees of Intel, Wal-Mart, BP, etc fell apart when the employers wanted to data mine their employees’ PHRs).
PHRs are just not ready for prime time. You may be promised that only you will control who can see your PHR—but how safe is that promise when it is not backed up by any laws or medical ethics?
Even a report commissioned by the Office of the Natl Coordinator for Health IT concluded these products do a lousy job of protecting consumers’ rights to privacy. Most do not have adequate privacy policies. See the report by Altarum at: http://www.patientprivacyrights.org/site/DocServer/Privacy_Review_of_PHRs_Altarum_2007_1_.pdf?docID=1181
In conclusions: Patient Privacy Rights is not recommending anyone use a PHR at this time—your data is not safe or private. The only PHR we know of with multiple layers of encryption and PKI that cannot be data mined is made by a compnay called Tolven. If you want to have a safe, secure, and private PHR, that is the only one to use as os today.
Deborah C. Peel, MD
Founder and Chair
Patient Privacy Rights
Thanks Deborah for your thoughtful comments on privacy, security and PHRs. Per those comments, I am assuming that you are referring to Web-based PHRs, and not those that reside on one’s personal desktop. My comments below reflect this assumption.
Have read the AQHR (PDF) sponsored report you mentioned that focuses on Web-based PHRs and yes, according to the results of that study, of the 35 security parameters they looked at the average number supported was ~9. Not a pretty picture. My only issue with that particular report is that they do not name names, i.e., which PHR solutions did they look at and the company performing the research relied only on what a given PHR service provider stated on their website. All secondary research, which is cheap to perform, but unlike primary research, often can be highly suspect, thus I am inclined to believe that the information/content of the report is, to some extent, superficial.
That being said, based on my own limited research to date, the quality of security, privacy, and overall ethics as it pertains to sharing of consumer health information of Web-based PHRs is literally all over the map. Some have clear, detailed statements and have the HON code “stamp of approval” on their website, others simple say something to the effect of “we use 128-bit encryption” (sure it secures the transmittal of your information but as you state, that has very little to do with how your information may be used) and then there are others who seem to ignore the topic altogether.
Quite a sorry state of affairs and I, like you, do worry about the consequences for consumers, for those who just don’t know any better, ending up in a PHR with ulterior motives.
My response is that not all PHRs are created equally. I agree with Dr. Peel if you are talking about a PHR from your insurance company or employer. They offer little permanence today. If you’re not changing employers regularly, your employer is changing your health plans every year.
In my opinion, these two groups represent the parties you should be hiding your information from not the ones you let hold on to it for you. They obviously have a huge vested interest in your private health information for their own gain.
I also agree with her when you’re talking about letting Microsoft or Google hold this information for you. I believe that few consumers realize that their personal health data is a new form of currency for the 21st Century and must be treated accordingly.
What you’re left with are the PHRs that are created to be owned and managed by the consumer. In these PHRs, privacy is better controlled, but functionality begins to fall apart. Most consumers soon figure out that what they have bought for their yearly membership fee is a complicated empty box, like a bank account with no money in it. Most stand alone PHRs leave the hard work of gathering valuable health information up to the consumer.
The only real PHR that will gain in traction in the near future is one that comes bundled in with a consumer centric service like Wellness. It will be automatically populated with data that has long-term value and then give the consumer the ability to add their own information if they choose.
David Clymer, CEO
It seems like business is still getting hit hard. Is anybody seeing an upswing in their respective niches? Health reform seems like a mess. I generate long term care insurance leads and annuity leads for the insurance industry, but volume has been terrible in the last two months. I am afraid the worst is yet to come, but maybe it is just my attitude.