PHRs: Certifiable?

There was a bit of buzz last week over the American Health Information Council's discussion around certification of Personal Health Records, with the Consumer Empowerment Workgroup not finding consensus on the issue. I've been waiting until the transcript of the CEW February 16 meeting was posted to comment on the workgroup's recommendations, however, the March 13th AHIC meeting which summarizes the CEW's February meeting has its transcript up already, so I'll work from that. When the Feb 16 transcript comes out I'll comment if necessary.

Quick recap on the Consumer Empowerment Workgroup:

Broad Charge for the Workgroup:

Make recommendations to the Community to gain wide spread adoption of a personal health record that is easy-to-use, portable, longitudinal, affordable, and consumer-centered.


Specific Charge for the Workgroup:

Make recommendations to the Community so that within one year, a pre-populated, consumer-directed and secure electronic registration summary is available to targeted populations. Make additional recommendations to the Community so that within one year, a widely available pre-populated medication history linked to the registration summary is deployed.

The February 16 meeting of the CEW attempted to find answers to the following questions:

• what is certification?
• how is certification actually going to be completed around a personal health record?
• what is the time involved for the certification process?
• what will the cost be for those innovators that are trying to get into the personal health record area?
• how will the certification help to protect consumers?
• what impact, in any, would certification have on innovation?

Notably, the question "what is a PHR?" is absent, although it's raised in the statement of dissent. While it may seem obvious, I think there should be a distinction between commercial PHR products and the general hazy notion of your PHI aggregated over a network.

In other words, it's one thing to make a platform for presenting your health record to you on a secure Web site, it's another to give me a report of all the data available to me from multiple sources using a clinical data exchange.

There are PHR products online I can go fill in myself, there are PHRs gaffer-taped onto EHR software products, there are PHRs auto populated by payors, there's a piece of paper in my wallet with my allergies on, there's various hospital records floating around...

Given a RHIO-like structure I could ostensibly aggregate my own data into my own PHR on my desktop by querying the exchange for myself.

I'll cut and paste the relevant sections of the transcript below, but in summary the split is over whether or not to recommend certification of PHRs against as-yet non-existing standards of privacy, security, interoperability and portability. The recommendation is for voluntary certification. Dr. Rose Marie Robertson, the Co-Chair of the group, led the charge for certification, David Lansky spoke for the five members who dissented.

In my estimation, the group is having a hard time defining what it is they're recommending. After Lansky speaks, Nancy Davenport-Ennis - the other Co-Chair - speaks to four different requirements the recommendation is trying to assure, i.e. privacy and security, transparency, affordability and interoperability.

Recommendation 1: HHS should support CCHIT and/or other certifying entities in identifying a pathway and timeline for voluntary certification of PHRs after adequate industry experience has been achieved in the market. Such certification should include: specifications for PHR privacy and security, interoperability between PHRs and personal health information data sources (including EHRs) consistent with HITSP-identified standards, and PHR portability. The certification criteria development process should take into account the best practices for security and privacy policies to be identified by the Consumer Empowerment Workgroup, the Confidentiality, Privacy, and Security Workgroup, and other relevant groups.

Recommendation 2: HHS, through the Centers for Medicare & Medicaid Services and the Indian Health Service, and in collaboration with the Office of the National Coordinator for Health IT, should develop plans to offer portable PHRs with adequate privacy protections to their beneficiaries, and HHS should report back to the Community about their plans as available. The plans should take into account the results of the studies and best practices recommended by the Consumer Empowerment Workgroup on January 23, 2007, as they become available, and should build upon work already underway at the agencies.

The dissenting statement was against Recommendation 1 only. The primary dissent was that instead of focussing on certifying a PHR's adherence to privacy and security standards, the workgroup should be formulating actual policy that PHR vendors could be held to, that PHRs are just too young an idea to even consider certifying them.

This is where my hacker side trumps my paranoid side.

PHRs barely exist. There are several Web sites that allow you to populate your own record, but they don't talk to any data sources. There are a few health plans that give you a sort of PHR, but they're not portable to other plans.

No-one has yet figured out what data is even available to populate a PHR, how to transport it across a network, how to audit it and the access to it, how to manage it once it's alive, the list is endless.

It seems almost obvious to me that PHRs must come to exist in exactly the same way personal credit data does now. Think about it:

• Credit data comes from providers; credit card issuers, lenders
• Credit data is aggregated by major clearinghouses; Equifax, Experian and TransUnion
• Consumers have access to their data, and the option to submit corrections
• Credit data is portable, no matter what bank issued the data remains usable
• Consumers have access to an audit trail of who asked for and who was given access to their credit data
• The information is heavily regulated and subject to proven policies

We can easily rewrite that and substitute clinical data:

• Personal health data comes from providers; hospitals, doctors
• Personal health data is aggregated by major clearinghouses; NHIN, RHIOs, clinical data exchanges
• Consumers (should) have access to their data, and the option to submit corrections
• Health data (must be) portable, no matter what health plan/provider is used the data must remain usable
• Consumers (*should) have access to an audit trail of who asked for and who was given access to their credit data
• The information should be heavily regulated and subject to proven policies

So asking providers of PHR technology to adhere to basic principles of security and privacy is great, but what policies will they be measured against?

It's kind of like the HON Code; a voluntary code of conduct that health content Web sites can claim adherence to. It's all well and good, and has certainly made inroads into consumer awareness, but there's nothing forcing me, as a health care Web site publisher, to neither (a) choose to adhere to the principles of the HON Code nor (b) remain accountable for my conduct if I choose to claim compliance.

This has led to billions of health care content pages on the Web that have little to no validity or governance.

The goal of PHRs should be consumer empowerment, and we can only get there by having real policy laid down for PHR producers to follow. We don't need to mandate specific technologies or functionalities, merely solid security and privacy requirements that can be upheld by the PHR hosts.

If the AHIC can't come up with adequate language, why not examine the banking industry and figure out what they use? Is our health information really so different? Is it really more sensitive?

AHIC has so far offered a tremendous amount of effort and work on our behalf, but as adoption becomes less of an issue we need actual governance and direction.

Let's certainly adopt a stance of having certification against standards and policies as a goal, but let's figure out the standards and policies first, yes? Frameworks are awesome, but without development they are useless ghosts of possibility. Man up and write it down. We need policy, not frameworks, and by all accounts we need it sooner not later.

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[Excerpt from transcript follows]

Dr. Rose Marie Robertson, Co-Chair, Consumer Empowerment Workgroup:

This -- the majority of the Group was convinced that enhancing and assuring privacy and security, as well as interoperability, would lead to greater adoption of personal health records. That this was important to do, and that it was complicated. That we needed to have standards, and expectations and policies, that we needed to derive that from the appropriate bodies. That we needed to be certain that we would not stifle innovation, and in particular, that we would not stifle innovation and entry into the market of groups providing services to those who are disadvantaged, so that small vendors who might aim at a targeted population that we very much want to be involved in, and able to access personal health records, in particular, should not be disadvantaged. We were reassured that sliding scales or perhaps even government grants or other [inaudible] could be found, so that [inaudible] as well as an electronic health record, one could level the playing field.

And we ultimately came to the [inaudible] that health and [inaudible] should support certifying entities [inaudible] other certifying entities, and we carefully worded it. In identifying a pathway and a timeline, so not in certifying, now, but in identifying a way and process for doing this, for voluntary certification of personal health records. So again, not mandatory certification, but voluntary certification that would provide, if you will, the underwriters’ code, that sort of assurance for the public, after adequate industry experience has been achieved in the market to know best how to do that.

That certification would include, we think, most importantly, specifications for privacy and security, and we plan to, as you see there, work with the confidentiality Privacy and Security Workgroup. We have begun those discussions, and will have actually another meeting with them on -- a meeting to discuss that on Friday.

It should also include issues of interoperability between personal health records and sources, because otherwise, those records [inaudible] are ineffectual. And portability. We think it’s quite important for patients to be able to take this information from a tethered system [inaudible] or one employer, and be able to bring that to another system.

We think that this process should take into account practices for those policies, as identified by our Workgroup, DDS Workgroup, and other relevant groups, perhaps; including the Privacy and Security Solutions Group. Not functionalities, as you’ll notice, but privacy and security interoperability and portability.

Let me turn to David Lansky and let him present the views of the dissenting group, whose letter you have in your packet as well.

David Lansky, Markle Foundation

MR. LANSKY: Thank you, Rose Marie. I want to first thank both Rose Marie and Nancy for leading a very vigorous and open discussion about a complex area. It has been a very constructive discussion, and I think all the parties to our Workgroup have felt that we have learned a lot by going through this discussion, and I hope some of you will participate in that with us today.

I think a key point, as I come to you, is that we do not have consensus about this issue. There is, across the industry, across healthcare, across the consumer sector, not yet enough experience or understanding to achieve a unified recommendation regarding how to proceed.

The reason, I think, we don’t have a consensus about the industry at this time on this question is that it’s frankly too early. We simply have not done enough work in the policy development area, in developing, and marketing and using these products, and in testing the relationship between those policies and those products, to know exactly the best way to more toward implementing the policies to help more forward.

I’d also say there is no question, as Rose Marie has said, that we all share the same objective, building a trustworthy, reliable environment where people share their health information, is what we’re here for. And finding the appropriate mechanisms to develop the right policies and enforce those policies is the task we need to have in common.

In some of the ways, I think we are premature in moving the certification process forward. First, we don’t actually know what a PHR is. We can’t yet define the “it.” Secondly, the industry has felt it’s new and improved [inaudible]. Not really talked to each other [inaudible] enough experience to know what can be applied and enforced. Thirdly, frankly, this is one of the first steps most of us have taken, marketing to 300 million Americans with an enormous array of needs and requirements, in health situations, is new for all of us in this environment; and how to evaluate and validate product in the consumer stage is a new challenge that we have not yet done.

And lastly, in terms of the prematurity of the work, while we have all identified, I think, some of the areas of privacy, and other policies where we have a significant need to establish public trust, we haven’t yet developed a policy. We have identified the problem; we have not yet recommended solution. So we don’t have, even as Mark said earlier, the standards yet against which to certify. So we feel that discussion of certification is premature, until we understand what those standards and policies should be, and then determine whether certification is an appropriate tool.

In the letter that you received we’ve identified a number of [inaudible] whether the logic that has supported PHR certification as we’re seeing, does that apply equally to the consumer marketplace? Do we know that certification will enhance privacy and security and trust in the public minds? And what is the risk of impeding innovation in the consumer marketplace, which may be different than the risk in the [inaudible] or physician marketplace.

But the good news, I think -- I want to close with, is that there is tremendous areas of agreement across all the Workgroups, which are highlighted in both letters, and I hope we’ll take some time today, and see if we can move forward in areas of very strong agreement.

We all agree that we need to establish the standards and specifications for both private and [inaudible] PHRs. We all agree we need to gain more industry experiences in the real world with these products and services. And we all agree that we need to develop privacy and security policies that can be used as [inaudible].

So I hope you will undertake efforts to address those three objections that we all share, and defer the question of certification until we understand what are those policies which must be enforced in the environment we’re working in.

The last point I want to make, is really to distinguish this idea of enforcement and policy development, the way we, and those who are [unintelligible] here, have seen the question, certification is one tool among at least half a dozen by which we can implement or enforce good policies. The others include a wide range, health certifications, statutes to [unintelligible]. There are a number of tools available to implement good policies. Certification is one.

I would hope that we would first do the hard work of developing the policies [inaudible], and then determine which method of implementation or enforcement would be appropriate. If certification proves to be one that is helpful at that point, I think we will have a very strong consensus to support it, once we have done the work of developing the necessary policy.

Again, I want to thank both you, Mr. Secretary, and the Community here for letting us be part of this vigorous discussion.
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Hospital Bill: Appendix Addendum

Well, my weekend got away from me, so I'll settle for blogging the hospital bill I just received regarding my recent day trip to the local Emergency Room, as chronicled in Appendix Addendum.

In case you missed the first post, I went to one ER, bailed, and went to a second one the next day. In all fairness, I haven't seen a claim made on my first, failed visit, which I'd be cool with if they billed for the labs they more than likely ordered before I left.

So, Hospital B.

In short summary, I had a blood and urine workup, one CAT scan, and was seen by an ER doc and a surgeon.

The bill goes like this:

Eight, count them, eight lab charges.

$101.00, $125.00, $28.20, $89.00, $89.00 again, $96.00, $50.00 and $62.00

Total lab charges: $640.20

Total amount covered by my insurance company? $62.41

All lab charges were covered to the tune of 9.75% exactly, each individual charge was paid at 9.75%.

Now, if this had been ten years ago and I was starting my little business and was scraping by uninsured - which is exactly the situation I used to be in - I would have been expected to pay $640.20, even though the hospital is perfectly willing to accept 9.75% of their bill as adequate payment.

Weird, huh?

So, what else. Ah yes. The CAT scan.

For some unfathomable reason I have two CAT scans listed. The first one was $1,022.00 and the second one was $1,043.00

I'm pretty sure I only had one CAT scan, I mean, I was there. Maybe one of these charges is a radiologist charge, which would explain the two items, but man, that's a nice paycheck for an hour's work.

Total bill for the CAT scan: $2065.00
Total covered? $201.29

There's that 9.75% again.

There's then a general Emergency Room charge of $516.00, covered at the increasingly-familiar rate of 9.75%, the hospital getting paid $50.30 of the bill.

Finally, the "service charge", $28.10, covered in its entirety. "Service Charge". It's labelled "State Claim Surcharge".

So, the entire bill was $3,249.30, the insurance company covers $342.10, of which $25.00 is apparently a copay I was supposed to cough up, which no-one asked for. Therefore, of the entire bill, the hospital received a check for $317.10, less than 10% of the billed amount.

Here's the rub. An uninsured person would be expected to pay ten times the accepted reimbursement. But of course, if an uninsured person could afford the bill, they could afford insurance.

According to various studies, medical bills account for up to half of all personal bankruptcies. These people have jobs, albeit low-paid and not offering health insurance.

29% of Brooklyn residents have no health insurance, and are not eligible for Medicaid. Those people without insurance have lower access to health care, and will put off seeing the doctor, get sicker, and end up in the Emergency Room, where they find themselves now with an unpayable bill of thousands of dollars, which the hospital has to write off, leading to higher prices etc etc.

I don't claim to have the answer, but market forces are certainly not working at this particular hospital, which filed for bankruptcy in 2006. I grew up in a single-payer society, and while we certainly don't have the best care in the world, we have better outcomes in many areas over the USA and no-one is scared to go see the doctor regularly simply because of cost.

The richest country in the world owes its citizens better than this. Whether it be government or private charity, somehow we should be providing for basic health care for all. The richest country in the world also has one of the widest wealth gaps, the haves are getting way ahead of the have-nots.

In the meantime, if you do get a hospital bill and can't afford to pay it, bear in mind that it's as negotiable as any other bill.









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Spheroid Joy

Well, I've been extremely quiet this week as I've been travelling a little, doing a lot of research into retail pharmacy and medication reconciliation in the hospital, plus working on this year's Health Care Report Card. I'm in DRG heaven...

On top of that, I'm working on not one but two new Web sites, one for RHIOs and another for the NYS Department of Health, and then if that's not enough we're about to welcome three new collaboratives to the Jeny community site.

So yeh, I'm busy.

I intend to rectify my quietude this weekend as I have a Saturday all to myself for the first time in a long time which will be spent blogging and deciding which of my stack of unread books should be first; on a recommendation I just got a copy of Rosemary Gibson's Wall Of Silence, which I think will be the first to be opened.

If I have the energy, I'm also going to take Paul Levy up on his challenge to enable hospitals to post their infection rates voluntarily - myself and a mate are thinking of building it and seeing if they come.

But I wanted to take a moment to thank Shahid at the HITSphere for adding A Scanner Brightly to the HITSphere blog roll. Shahid runs a huge aggregator of HIT content, plus his own blog at healthcareguy.com, he's got a lot of cool stuff going on, go check him out.‎ Full story...

New Reports in KY, CA and IN

Martina at AboutHealthTransparency.org reports on three new public reporting initiatives around the country, one hospital level report and two, count them, two physician specific quality reports.‎ Full story...

Ad-supported, Free EMR System

I have absolutely no idea how I feel about this.

It's Google, it must be good.

It's advertising revenue from personal clinical data, it must be evil.

Good. Evil. Good. Evil.

(head explodes)

Check out the company's PatientFusion product too.


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Appendix Addendum

This is a personal account of my recent brush with appendicitis and the fun I had getting hospital care...

I had appendicitis, but it took me a week and a half to figure it out. Couple that with my built-in fear of all things medicinal and by the time I had a CAT scan I'd actually beaten the inflammation back from whence it came.

As it turns out, I now know what that funny stomach ache that lasted a week back when I lived in France actually was. That's right. I've had appendicitis TWICE.

So seeing as how I'm this health care report card guy, I decided to put my money where my mouth is and chose a hospital based on the report card I built. Due to the nature of my work I have a better knowledge than most of the hospitals in my area, and I chose Hospital A, high scores for quality and surgical infection prevention, not to mention a nice middle-range $14,000 average charge for an appendectomy.

(Yes, I'm price sensitive. I grasp the fuzzy math that the more I spend on health care, the less my boss has to give me a raise next year.)

The Doctor is Out

I should back up a bit and mention that I called both of my doctors before going to the emergency room, I really didn't feel like I was in an emergency and I simply wanted a doctor to examine me. I'm on the books with two guys in Brooklyn, neither of whom could see me within a day and half of me calling.

I tried, damn it.

One was out for two days, the other had been paged three times in three hours with no reply. The girl at the office suggested his pager might be broken. I've only been to the guy once, in a recent effort to change from my DO to an MD. I like my DO, but no-one else does, the general theory being that DOs suck and MDs are gods. This particular MD was not at all helpful, and managed to lose my head X-rays for a week, but he has privileges at Hospital A so I figured I'd give it a whirl.

Hospital "A"

So off I trundled to Hospital A. It's a nice place, my son was born there, it's in trendy, upper-middle class Park Slope, so I anticipated good customer service also. It's a hike from Bay Ridge, but I felt the thirty minute drive and the potential three days to find a parking spot were worth it.

I got to the ER and wrote my name on a piece of paper and followed the instructions to post it through an anonymous slot. This later turned out to be the triage room.

The ER waiting room was pretty full, and no signs or clocks gave me any indication of how long I would be waiting or how many people were in front of me to see the doctor.

The deli where I buy my lunch can handle this simple task, and they only get five bucks from me. I'm in an ER waiting to spend $14,000 dollars. Come on people!

I waited about half an hour and was methodically seen by a triage person. I told him about my abdominal pain, other uncomfortable and unmentionable GI issues, the mentionable projectile vomiting, and I had my blood pressure taken. Blood was removed from my body with no indication as to why. I assume it was for tests, but still, a few words would be nice.

I was then given a plastic bracelet with a close approximation of my name handwritten on it, and was then directed to the *real* ER waiting room. Up until now I had been in the triage waiting room.

Gah.

The ER waiting room proper had many more people waiting, along with a TV. I toyed with the idea of turning it off using my universal off button, but felt that this was one audience who needed their network television.

I was registered and my billing details were taken. I then waited another three and a half hours or more until I became so uncomfortable sitting on the plastic chair I elected to leave so I could go home and lie down.

Strike one.

--

I didn't tell them I was leaving, I simply left; but here's the reason I didn't go whine about how long it was taking: health care is a service industry. My knowledge of service industries tells me that if I get seen out of order or in response to a complaint I make, my quality of service is likely to go down.

The hospital equivalent of the waiter spitting in your sandwich scares me.

If we're talking about sewing buttons on a coat I may make the value decision to be loud and demanding if I think my button sewing service is failing me, as I do not value buttons highly enough to care if the button sewer subconsciously does a crappy job because I'm annoying; however, I refuse to receive service from a health care professional who may be pissed at me.

I'm just not willing to risk it.

Hospital "B"

The next day I cheated and put my inside knowledge to work for me. I knew that Hospital B had recently filed for bankruptcy, had appeared in the infamous Berger Commission hospital closure list and was suffering a large decline in ambulance drop-offs. Plus, it's literally around the corner from me.

The down side was that, according to my report card, Hospital B scores very low on surgical infection, and had a surprisingly high average bill for appendectomies, a whopping $21,600!

However, I was still telling myself this was a bout of constipation and I really just wanted a trained medical professional to rule out appendicitis.

I trudged around the block to Hospital B and my cunning plan proved itself when I saw only one other person waiting in the ER.

Victory was mine!

I was triaged in about five minutes, and the only difference was that Hospital B also requested a urine sample, Hospital A had not done so. More surprisingly, unlike the scrawled, unreadable bracelet I received at Hospital A, I was given a computer-printed bracelet with my name, date of birth and other useful information on it.

I was begininng to be impressed.

A doctor came out within ten minutes, and guided me to the ER. I ran through the symptoms and professed my half-arsed fear that I had appendicitis, but the doctor pretty much ruled it out as I had no fever nor any other signs usually found with appendicitis. However, she recommended I get a CAT scan. I resigned myself to the three hours of Barium digestion and said yes. By now I was in a hospital gown on a wheeled bed.

Over the course of the next three hours I was successively removed further and further from the ER as people with real injuries and worse pain came in. By the time I was sent up for the CAT scan I was at the very end of the corridor. My gut feeling (pun intended) was that most of the staff figured I was fine, I obviously didn't have appendicitis as I looked perfectly fit and healthy apart from the searing stabbing pain I felt when I poked myself in the gut.

I overheard many conversations about the hospital's recent bankruptcy filing, people's holiday pay, new jobs, that sort of thing. I probably didn't help myself much by having brought a copy of Ian Morrison's "Health Care in the New Millennium" to read.

Undaunted, I got my CAT scan and was wheeled downstairs to await the radiology report. That took about another hour, at which time we found out that yes, of course it's appendicitis, here, have some antibiotics, please wait for the surgeon.

--

The best part was when they came up and just started hooking up fluids to an IV without telling me what they were doing. I had to stop them, get their attention, and have them tell me exactly what they were doing and why.

You can't just walk up to someone and start pumping stuff into them, can you?

Who do these people think they are, and who do they think *we* are? I'm sure the routine stuff gets boring after a while, but seriously, inform me.

By now I was actually down the corridor and around the corner, so I was practically outside the hospital. I sat and read and waited. And waited. And waited.

I was so invested by this point I was resigned to waiting for the surgeon to arrive. However, it turns out that I was by now parked outside the room where you put dangerous folk such as people with tuberculosis.

Of course, what are the odds of anyone turning up at a bankrupt hospital at 7 in the evening with tuberculosis?

Odds on, apparently.

A guy was brought in with full blown TB, a fact I only know because the nursing staff were discussing his dangerous-ness right around the corner from me, well out of earshot of the real patients.

Masks were handed out to the staff and the wife was briefed on her need to be tested. All of which was fine, until they left to go do other nursey things and this TB-ridden moron kept LEAVING HIS ISOLATION ROOM. RIGHT ACROSS FROM ME.

So, considering I had absolutely no intention of being operated on at Hospital B, and given the fact that a family of TB was walking past me asking how I felt, I decided to make a break for it. I wheeled myself down to the ER desk and asked to be discharged. Everyone seemed a little perturbed about that and convinced me to stay. I decided to give the surgeon a half hour, after which I would sign out against medical advice.

My antibiotics had finished a long time ago, and I was just in the middle of trying to figure out how to remove the IV from my arm without anyone noticing when magically, the surgeon arrived.

He was a bit flummoxed I think by the diagnosis, and was in no rush to whip the little bugger out. He wanted me to stay overnight but I could imagine nothing less inviting, so I sweet-talked him into letting me go home under the promise that if all hell broke loose in my abdomen I'd be back around the corner in two minutes flat.

He signed me out under "abdominal pains of unknown origin" or some such safety diagnosis, and I went home, whereupon I alternated between sleeping and eating toast for three days.

I feel gipped by this, I have appendicitis, I'm willing to sign out against medical advice, why stick me with a phony diagnosis?

Epilogue

I am now pretty much 100% better, although a bit gurgly. The pain's all gone, I have a huge new understanding of how medical care is delivered and how hospitals work from a patient's perspective, and best of all, I still own an appendix.

Now, I am not the kind of person who believes in vestigial appendages. It's in there, and it's in there for a reason. I do subscribe to the fact that it's great for digesting grass, and I also subscribe to the fact that I am evolutionally unfit to consume grass or other green leafage, being more genetically predisposed to large chunks of dripping red meat.

Therefore, I am now pronouncing that not only are appendices necessary, mine is different from most everybody else's which is why I want to throw up when I see cabbage or lettuce. Or spinach.

So there.

--

My next experiment in health care will be trying to schedule an appendectomy without a diagnosis of appendicitis, as I suppose it really should be removed at some point. It's obviously not happy in there, but without a valid reason for having it taken out as part of an emergency, I'm curious to see what my options are.

Seems to me that with my history I should be able to call up a hospital and just schedule an appendectomy, but I've a funny feeling nothing is that easy.

Common sense tells me it would be better to have it removed while it's in a vegetative state (har har) as opposed to inflamed and angry, as then it could be removed laparascopically. But hey, what do I know, I'm just the owner/operator of a human body.

Stay tuned.

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Generic Prescription Pricing: Where's My Discount?

Kaisernetwork.org has a review of a WSJ article that ran yesterday showing how generic prescription drugs are often not saving the consumer much over the brand name version.

The example given is Zocor, priced at $149.99 for thirty 20mg tablets, now competing with generic simvastatin which was being sold anywhere from $125 to $139.99. When called on it, Walgreens, CVS and drugstore.com dropped their prices.

Walgreens went down to $89.99, CVS to $79.99, and drugstore.com dropped to... get this... $27.99!

Amazing.

That's a cut from $4.17 to 93 cents per pill.

Even more amazing, all three of them claimed they dropped the price as part of their regular price reviews.

;o)

The New York State Attorney General's Web site has a prescription drug price compare tool that allows you to compare prices on a number of medications.

Just for fun, I punched in my ZIP code and reviewed the prices for the same thirty 20mg prescription.

For Zocor, at the pharmacies in and around my ZIP code, I have a range of $100.02 up to $199.28, which works out to $3.37 to $6.64 a pill.

I then went to pharmacychecker.com and found a range of prices for 20mg Zocor from $1.01 to $5.17 a pill.

Admittedly, some of those prices were for larger purchases, the $1.01 price was for 90, and most of the cheaper prices were from Canadian pharmacies, but still, come on. If pharmacy A can sell it for a buck then pharmacy B probably doesn't need to be selling it at $6 a pop.

To compare drug prices in your area, visit Consumer Health Ratings and see if they have a prescription drug price site in your state.

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The flip side.

I'm not 100% certain Zocor makes for a fair comparison. I'm sure I know a lot less than the Wall Street Journal about these things, but am I wrong in thinking that Merck slashed prices on Zocor in an effort to retain market share once the patent ran out?

If so, then there shouldn't be that huge of a gap between brand and generic pricing, in this instance. Right? If you know better, comment please.

However, according to this release from January 2006, at least one watchdog - the NY State Alliance for Retired Americans - has been watchdogging the issue for a while.‎ Full story...

Health Care Pricing Transparency - Help or Hindrance?

Health Affairs has a Web Exclusive entitled "Shopping for Price in Medical Care" (subscription req'd) by Paul B. Ginsburg. The article raises some interesting questions about the usefulness of pricing transparency and the barriers to publishing meaningful numbers.

As someone who is intimately involved with publishing health care pricing, I've struggled to answer the questions "who does this benefit?" and "who shops for health care by price?". One of the largest problems I face when publishing hospital pricing is that the only data I can readily lay my hands on is hospital charges.

For the uninitiated, getting an operation can have many price tags. In the following examples I will use hip replacement surgery, a well-known New York hospital, and data from several public pricing reports.

The first is the charge. This is the same as the sticker price on a new car. It's the manufacturer's recommended retail price. We all know no-one pays the sticker price on a car, but unfortunately there are plenty of people who receive a sticker price bill for hospital care. The uninsured, who are by definition the least able to afford health care, are charged full price on the bill. As with anything, this is negotiable, but few people realize this.

Average Hospital Charge: $32,800

The next amount you might hear is cost. This is the cost price of performing the service. Back to the car dealer, this would be how much the dealer pays for the car before the price gets marked up.

Hospital Cost: $UNKNOWN, but a good guess for this hospital would be $20,000

Another way the final bill might be computed is negotiated rate. Simply put, this is a bulk purchase price. A car dealer might come up with a steeply discounted price for a customer who will buy twenty cars instead of one. Hospitals do the same by discounting services to health insurance plans who will hopefully push a lot of business their way.

Average Guesstimated Negotiated Rate: $26,000

Then we have reimbursement rates. These are the set prices, give or take, that government pays if the patient is eligible for Medicare or Medicaid. Sort of GSA pricing for surgery.

Average Medicare Reimbursement: $18,000 - $21,000
Medicaid Reimbursement: $20,500

So, how does any of this help you? Can any of this help you?

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Well, let's say you're a self-employed computer programmer. You made $60,000 last year, and you owe $20,000 in taxes. You get your hip replaced. You are not eligible for Medicaid, nor the hospital's own charity care policy.

You get a bill for the sticker price, i.e. $32,800.

That's 50% of your annual net income.

Some hospitals make it clear you can apply for discounts, some don't. There's even been confusion from hospitals wondering if they were legally allowed (PDF) to offer a discount.

I once had a guy work for me who was fighting an $80,000 bill under similar circumstances; his HMO had denied payment and he was stuck with the bill. Once he started working on a hospital pricing report he became aware of what insurance companies were likely paying for the same type of surgery. This helped him successfully negotiate with the hospital.

Let's take another example.

You have a decent insurance plan from your employer, but you really want to go to a specific hospital that isn't in the HMO network, maybe it's closer to your house and you want your kids to be able to visit you. You figure you'll just soak up the co-pay. But how much will it be?

In the example above, the surrounding hospitals charge on average anywhere from $15,000 to $49,500 for the same surgery. That makes your 20% co-pay anywhere from $3,000 to $9,900.

Would that factor into your decision to go out of network?

Don't forget that if you do in fact go out of network, your HMO is stuck with the other 80% of the retail price as they have not negotiated a price with the out of network hospital. This drives up the cost of your employer's health insurance premiums, reducing the pot of money the employer may otherwise have for salary raises while driving up the employer's cost of doing business, thereby reducing your employer's competitive pricing in the open market, thereby reducing your job security.

Health Affairs itself has published a study that shows illness and medical bills caused half of the 1.5 million personal bankruptcies in 2001, affecting mostly middle-class people who mostly had health insurance at the beginning of the illness.



I have about twenty news articles pasted up on my wall of horror story after horror story that could have been avoided if the person had known their rights and options before getting hit with an unpayable hospital bill.

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Of course, none of the above includes any bill from your surgeon or your anaesthetist, this just pays room and board, medications, and ancillary services. Surgeons are often not employed by the hospital, although they're the ones ordering all your labs and tests and medications.

This is what leads to the complexity of publishing pricing in the first place: what exactly is the cost of care?

A typical hospital visit may incur an ER bill, a hospital stay bill, a doctor's bill, a surgeon's bill, an anaesthetist's bill, some home care and maybe an ambulance.

Each bill will come from a different provider, and each one will be subject to different discount, charity and payment plan options.

Imagine settling on a car then getting a separate bill for the tires, windows and air filter from three companies you've never heard of.

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High deductible health plans are all the rage now, or at least they're trying to be. The idea is that as consumers we will become more price-conscious as we take on a larger portion of the cost of our health care.

The health care industry has done such a great job of insulating us from the money changing hands that we now live in a perpetual state of blissful ignorance where higher prices mean better quality care to the average consumer. It's invisible money, free money; and the less we spend the more someone else might.

The doctor wants to run more tests? Go for it, I'm not paying. Didn't I just have those tests a month ago? Yep, but who knows how to get the record of the results? It's not like a bank statement where I can go online and pull down my most recent lab results. It's on a piece of paper, in a cardboard folder, on a metal shelf, with half my name on it, at some doctor's office. That would take some effort on *my* part. Nah, let the doc run the tests.

"Utilization" is a fancy word the industry uses instead of "consumption". Given that "consumption" could mean use of services or tuberculosis, this is probably necessary, but still, we're forgetting how much we consume. There's no need.

I wish that when I next publish a pricing report I could post the anticipated co-pay for a given health plan. Outside of the five percent of discharges that are uninsured, charges are, in some ways, worthless.

Unluckily for me and you the negotiated rates that lead to your co-pays are secret sauce insider information that is kept as proprietary information. Some insurers are starting to post co-pay amounts on their member-only Web sites, which is great news, but the rest of us are still in the dark.

While true that taken entirely by themselves hospital charges are shallow, uninformative numbers, I think the national conversation that has been started because of efforts to publish pricing will lead to a more informed consumer, one who evaluates the standard of the health care delivered without blind acceptance of price or quality.

There are variations in price and quality.

There are variations in price and quality.

There are variations in price and quality.

That's important to know.

We're getting to a place where providers will be reimbursed at higher rates for providing higher quality and better outcomes. We're getting to a place we're consumers are more aware of their options, and their responsibilities. We're getting to a place where providers will be held accountable for their quality of care or lack thereof.

In the meantime, while we build this, we need every ounce of information we can get our hands on. No-one's crying that there's too much information out there, just that we don't necessarily know what to do with it.

It's a work in progress, and I for one do not intend on sacrificing good on the altar of perfect. We work with what we've got, and we push for more.

The health care industry at large has to stop trying to apply peer-reviewed, scientific methodological philosophies to customer satisfaction.

Information wants to be free, and health care doesn't. Let's find a middle ground and work towards actionable public reporting of quality *and* pricing *and* patient satisfaction.

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If you want to learn a little more about the pricing of health care, visit ConsumerHealthRatings.com - they have dozens of price reports on hospital stays, prescription drugs, nursing homes and general medical care.‎ Full story...

California Data Exchange Folds

The Santa Barbara County Care Data Exchange, touted as the longest-running effort to launch a regional health information organization, has closed it's virtual doors because of privacy concerns and doubts about ongoing costs.

With the upcoming round of funding for the NHIN being targeted at the RHIOs themselves, I'm curious as to why they didn't hang on for additional funding, although funding wasn't exactly the problem. Nonetheless, the effort underway now to start figuring out what the RHIOs have learned, and how to share the information nationally will be shortchanged if SBCCDE doesn't get to particpate.

While hugely unfortunate that they can't keep the exchange running, SBCCDE could now serve as a goldmine of lessons learned. An additional bonus is the comment from the California Healthcare Foundation, which put an initial $10 million into the exchange, saying it will consider open-sourcing the software created to run the exchange for other RHIOs to use.

If anyone has any idea who we can write to to show our support for this idea, please comment.‎ Full story...

All The Technology In The World...

... can't work if you don't use it. Sometimes, with all the technology we employ to create safeguards, we lull ourselves into a false sense of security. I've run into this myself more than a few times, where I overly trust my code or my policies to bring about the outcomes I want.

This story about an impostor working a full shift in an E.R. reminds us all that no matter how much thought and preparation we put into any system, the weakest link is always the trust you place in your users.‎ Full story...

NHIN Patient Empowerment Gets Mixed Feedback

GHIT reports that HHS is getting mixed reviews for its decision to insist that the next iteration of the Nationwide Health Information Network allow patients to control who sees their electronic health records.

As I've said before, it's one thing to call for granular control, it's another to lay out guidance for the RHIOs and state-wide HIEs on how to write and implement law and policy that governs the granular controls we're talking about. We're not waiting on the technology, that part is already done.

For a different perspective, read Modern Healthcare's piece on HIPAA ten years later (registration req'd), and the confusion about the law that still reigns. Scary.‎ Full story...

Indiana, California To Publish Report Cards

FortWayne.com reports that the Indiana State Department of Health will release their first state-wide adverse events report tomorrow (Tuesday).

The report should be available by mid-day local time. Kudos to Indiana.

For a list of all states that provide an adverse event reporting system visit the National Academy for State Health Policy.

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The California HealthCare Foundation will release CalHospital Compare tomorrow.

The 209 hospitals rated account for 70% of all hospital admissions in California and the conditions and procedures rated (heart attack, heart failure, heart bypass surgery, pneumonia, and maternity) are the five most common reasons for being admitted to a hospital. Other conditions and measures will be included in future updates.

The site will include reports on Heart Attack, Heart Failure, and Pneumonia Care; Coronary Artery Bypass; Maternity Care; Patient Experience Surveys; and Patient Safety. Hospitals will be rated one of Superior, Above average, Average, Below average or Poor‎ Full story...

Open Source the Nationwide Health Information Network

I've been catching up on some missed news what with all the travel lately, and I found some bits and pieces that will make it into the next update of my consumer health information presentation.

I'm not sure whether we're looking at an age gap, a technology gap, or simple Ludditism, but whichever it is it needs to be addressed sooner rather than later.

More and more I'm seeing reports talking about what consumers want and expect from electronic medical records. Markle released a study in December of 2006 that reports "Two-thirds of the public (65%) is interested in accessing their own personal health information electronically".

Overall, the survey findings point to consumers wanting control over who has access to their records and being concerned about potential privacy issues.

In a February 2007 prepared statement to the Subcommittee on Oversight of Government Management, Markle's Connecting For Health Chair Carol Diamond underlines these concerns and neatly summarizes the problem: consumers want doctors to have access to their records, but consumers want control and oversight over the doctors who see their records.

Markle has an excellent paper on A Common Framework for Networked Personal Health Information which details the common, standards manner in which health information networks should be structured, including my own favourite; distributed data.

The first paragraph of the paper is especially informative:

"The average person’s ability to access data and communicate electronically is proliferating exponentially. Consumer adoption of digitally networked services has transformed the culture of many industries — often in ways
unimaginable barely a decade ago."

Unfortunately, the physician practice, and maybe the physician, hasn't kept up. The same physician who checks his stocks online, obtains electronic CME credit and can book a tee time from the course Web site still doesn't want his patients E-mailing him.

In the presentations I give, I hear push back from the older physicians and excitement from the younger ones. I think it's a simple fact of life, you can't change business practices wholesale. These docs have been doing business without electronic data exchange for decades, it's too much to ask them to lead the way.

As I say time and again, this is not necessarily a bad thing. On the one hand, health care is behind the times. On the other, the industry at large has a golden opportunity to learn from the mistakes of all the industries that *have* adopted electronic information networks as a core of their business.

We have this amazing opportunity to do it right the first time.

The gap, as I see it, is simply that consumers are now way more information-savvy than the health care industry; and the Nationwide Health Information Network (NHIN) doesn't seem to be going down the obvious path of not reinventing the wheel.

My major gripe is the whole *Regional* part of Regional Health Information Networks.

I know this is America and the land of free market and a (perceived) hands-off federal government, but the above survey bears out my belief that this is one instance where the feds should step in and say "this is how you're going to share data, this is how you're going to protect it".

Instead, we have dozens of almost-faceless organisations around the country trying to figure it out as they go, often formed by budget- and market-conscious hospital and physician groups who are the very people we're trying to change, the very people who have spent decades not sharing data with each other.

We have standards. We have lessons learned. We have vast repositories of open, transparent software that can be utilised. We have entire industries including finance and travel that have trodden this path. I don't feel like we're learning from them.

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AHIMA just released a report that essentially says the same thing. RHIOs, state-level HIEs and the feds just aren't doing enough to coordinate the effort. Some highlights:

"Currently, there is little sharing of lessons learned, products (e.g., business agreements, policies, service contracts), and services between the NHIN contractors and the state-level HIEs beyond those states directly involved in the NHIN contract projects."

"There is no central authority that: (1) is accountable for ensuring that HIT is directed toward transforming healthcare, or measuring progress against that goal; or (2) makes key HIT adoption-related decisions, such as resolving disputes among collaborating entities."

"In summary, there is an understanding of how standards harmonization, certification compliance, security and privacy collaboration, and NHIN prototyping all relate strategically to the acceleration of HIT adoption. However, the disconnects among these tactical projects create the perception of multiple efforts directed at individual issues with no overarching strategic plan connecting them."

Linux and Perl figured this out a long time ago. The free and open source software community has a long established tradition of organised adhocracies and distributed development with benevolent dictator oversight.

And yet we seem to be building a national infrastructure like it's 1980; industry-facing, industry-led and industry-serving. I guess it's like those Microsoft / Apple ads. One's the stodgy business type, the other is user-friendly and cool.

AHIC has empanelled a Consumer Empowerment Workgroup, but my bet is the first hurdle will be showing a business case to the HIE/RHIO community that makes it worth their while. It's not anyone's fault, as long as we have disparate entities coming up with infrastructure there'll be no sustainable model for them to invest in providing the patient empowerment in the first place. You can't blame them for not doing it.

We're deep into Web 2.0 and the promise of a semantic Web that delivers on the promise of true user interaction and vastly improved user participation. Let's build a national health infrastructure that acknowledges this, that is people-facing, patient-focussed, open, transparent and accountable.

The culture clash of a closed-source industry such as health care and the open, transparent goals of a national health information network cannot be solved by throwing millions of dollars at closed-source vendors like Northrop Grumman.

Open source is what built and maintains the World Wide Web you're reading this article on, it's the foundation of the Internet, and we manage to keep it up just about 24/7. Everyone seems to like how it works. Open source delivers your E-mail, uploads your photos, gets you your credit card statement and let's you pay bills online.

I'm not saying we should hand the NHIN over to Silicon Valley or the open source community, but we might want to ask them to join the discussion.

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Further reading: Open source vs. closed source (Wikipedia) and The Cathedral and the Bazaar.‎ Full story...

Black Box in the OR

Just thinking out loud, but I've had this idea running around my head for a while and I thought I'd share it.

We have flight recorders in airplanes. Cameras in taxis. Buses and trucks have trip recorders. Casinos have video cameras. *Everywhere*.

So why don't we have a record of the operating room? Why are we subjected to handwritten medical notes and charts?

Why oh why can't we have casino-style cameras, one in each operating room? That way, when there's a problem we have a record of the incident to review objectively. Heck, I can imagine a business model selling the video to the patient, I know I'd pay a hundred bucks to see what happened while I was under.

Dump the video after a year or something if needed, but is it really such a weird idea?‎ Full story...

Health Technology Surveys

THCB has a post about a Cisco-sponsored study of Internet use in health care by patients (press release).

Three things stood out for me as being very interesting:

First of all, 11% of respondents said they had used the Internet to evaluate a physician. 11% doesn't sound like very much, but it's 11% compared to 0% not too long ago, when patients had nowhere to go to perform the same kind of evaluations, and the number is growing.

As I mentioned in a recent presentation to the Institute for the Advancement of Health Care Management, this may or may not be a good thing, with increasing self-diagnosis and patients turning up at the doctor's office with armfuls of misinformation, but that's a different problem...

Secondly and thirdly, two questions were asked about how patients thought electronic medical records (EMR) would benefit them.

When asked to choose between being able to control who has access to their EMR or having an EMR available to all medics, 68% chose controlling access. Then, when asked whether they preferred easy access to their EMR over protected privacy, 73% chose privacy as their desired outcome.

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Another survey out is the American Hospital Association's findings of its 2006 survey of community hospitals and their involvement with health information technology. Of the more than 1,500 respondents, 68% had worked on adding electronic health records programs during the year and nearly half reported a moderate or high use of HIT.

However, reading page 17 - which looks at who the hospitals are sharing information with - we see physician offices, public health departments, other hospitals, labs, the list goes on.

You know who's missing?

THE PATIENTS.

This underscores my belief that HIEs around the country that are currently more concerned with keeping tight, internal ownership of patient records need to understand that patients will demand control over their data, exactly the same way they currently control and have ownership of banking and credit data.

Oddly, when Cisco asked who the patients would prefer to receive such services from, HIE/RHIO type organisations were not included as a possible response, which is a shame because (a) most people don't know they're being formed and (b) have even less idea how much power these HIEs will wield over their personal and highly sensitive data.

These decisions are being made right now and I don't know that the patient population is being adequately involved.
‎ Full story...

Georgia Hospital Charges Published Online

Georgia Hospital Price Check launched yesterday, another hospital charges public report powered by WHA Information Center.

‎ Full story...

Child Dies for Lack of Dental Care

I'm loth to get involved with the whole insurance thing, mainly because I'm probably extremely under-informed, but today's tragic story in the Post documenting one mother's loss of a son over the lack of a dentist prompted me to ask one question.

In the USA, as I understand it, if you can't afford a lawyer, one is appointed for you. Why can't we do the same thing with dentists? Is it truly easier to get criminal defense services than basic oral hygiene?

If so, am I the only one horrified? Are there lessons to be learned from the legal profession's ability to get paid while managing to serve the poorest sections of our society?
‎ Full story...

IBM and Duke Looking Cozy

First of all, Dydd Dewi Sant Hapus! It's Saint David's Day and yes, I'm wearing a leek. The Empire State Building was lit up in Welsh colours last night just for us Cymreig, as part of "Wales in NY Week". Thanks!

Onto business.

The Washington Post reported last week that Duke University had launched a patient portal that will allow patients "to pay medical bills, schedule doctor appointments and eventually view their personal medical histories". (A more technical article is available at ebizQ.)

I'm usually a little bit past cynical when I hear the word "eventually", but I was reminded of this story this morning so I dug around and found out two things I thought were pretty neat.

One, "eventually" in this case means two months! Why they didn't just wait two months and launch a full service I don't know, but still, if it comes together that's half a million people with free access to their medical history. Very, very cool.

Secondly, I was struck by the third option on the home page, after "Request an Appointment" and "Manage Your Account" there's a link that reads "Visit 'Payment History' for information you need if you're itemizing health care expenses on your taxes".

I'm eagerly awaiting the day my medical history is as automated and accessible as my credit history, and it's smart communications like the above that make the data that much more utile and customer-friendly.

It's a shining example that it's not software that makes the system, it's the people implementing that make the system; and people who want to work with touchy-feely open, standards-based systems tend to produce touchy-feely services that the average user can enjoy and gain from. Flickr is a great example of this, a service that was built by people with love in their hearts, not their three-month review.

I keep on thinking that yes, health care has lagged in IT adoption, especially Web services; but then again, now that it's on the table and people are spending money, we have this amazing opportunity to do it right the first time!

The whole thing runs on IBM's WebSphere software, a standards-based middleware infrastructure that basically takes older systems and wedges Web services between them to get more out of them than was previously gettable. IBM, of course, is at the forefront of Open Document Format, another standard that will seriously impact health information exchange for the better.

Duke itself has representation on the OASIS International Health Continuum Technical Committee which all adds up to a very open, standards-oriented electronic health record that goes way beyond billing and labs and could truly immerse the patient in their role as an informed, advocative consumer.

It probably also helped that IBM's vice president of SOA and WebSphere strategy, Sandy Carter, is a graduate of Duke University.

All in all it looks like a match made in service-oriented architecture heaven.

If anyone is a user of the Duke HealthView system, I'd be interested to hear from you.
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