Let’s hope these are delusio

He’s become disgusted (revolted?) and is telling the truth about eating breakfast on gold-rimmed china on the company jet after seeing a poor people’s “health fair” where medical volunteers delivered care in the animal stalls on the county fairgrounds. Read. Important.

http://www.prwatch.org/node/8422

He says whenever we hear scare statements about “government run healthcare” we should be aware that that’s a consciously designed bogus tactic concocted by the insurance PR people to protect profit margins, and patients be damned. (Well, he didn’t say the “be damned” part explicitly, but that’s the clear consequence, as shown in his story.)

Read.

I hate to sound like a pessimist, but I’m not sure that you can take this statement as fact. For example the first priority of many publicly-traded health insurance companies is to maximize profits and shareholder value… Ditto for drug companies. Not that I am against that, but there are more motives here than just delivering quality efficient care. If cost were not an issue I think we would already HAVE the quality efficient care. I will refer you to this article and then shut up :)

http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande

The issue of patient engagement which many think would be jumped started by ending the discussion on who “owns” medical records is the issue. No argument here…a provider “owns” the notes which they record on their care of a patient. The issue many have is that, as system gatekeepers, physicians then stake claim (with historical precedent) to controlling access to all medical records. It’s enabled by the system. For instance, here a patient requesting a copy of their record from a hospital may do so, in writing, for a cost of around $50. The document arrives in the mail 4-6 weeks after the request.
A family physician however, can speak with the same medical records department and have a copy of the medical record faxed to them, same day, for…you guessed it. Free.

Back to the issue of evidence of quality outcomes that you’ve invoked again. We have to remember again that context is everything…if patients are more satisfied does this equate with improved quality (in my books it does but it’s arguable)? Here’s one example http://www.longwoods.com/view.php?aid=20369&cat=330

But while the studies are limited as yet, there are studies which suggest better compliance with chronic disease treatment, accuracy of records, improvements in communication to name a few of the benefits. As an aside, it’s important to note that the toughest audience an EHR will ever play is front of a health insurer crowd…and there are numerous of them who have plans to introduce PHRs over the next year…so clearly there’s a business case in it somewhere.

Of course there are security issues. But they can and are being addressed progressively. This is by no means a simple issue, but the dialog between the medical profession in particular, and funders and consumers must take place. Providers stomping their feet and holding their breath saying they don’t want to play is just not productive…particularly when we all know that everyone’s first priority is delivering better quality, more efficient care to all citizens. The alternative to not engaging in the discussion will be, I suspect, that people will just innovate around what they see as an unjustifiable roadblock – this is already happening with HealthVault, Google and others agressively entering the PHR market. In other words, you innovate or die in this current environment.

This is what I was trying to point out with my paper example. Paper is certainly not DEVOID of risk of loss or breach, but a sufficiently intelligent hacker (or even a disgruntled employee!) could easily make off with MILLIONS of electronic patient records on a thumb drive, whereas bits of paper are large, heavy, and unwieldy making it practically difficult to make off with large amounts of patients’ information.

“But I have to say, if someone wants to provide a service without regulation, they should get out of the health care business and become a securities broker instead.”

I don’t have a problem with regulation per se. But saying “every field has regulation, deal with it” when the specific regulation in question actually makes things WORSE is not a solution. HIPAA needs to be reformed.

“But in the case of healthcare, LIVES are at stake, people! Policy discussions that don’t focus on “the job to be done” are way, way off base in my view.”

This is a good point, but it brings me back to my original question: Can anyone show me literature or studies that show that increasing patient access to their own data improves outcomes? I’m not saying that they don’t, I’m perfectly willing to concede that they may, but I haven’t seen any evidence, pro or con.

As a technology person, I am a huge advocate of information wants to be free. I am also a patient, which when coupled with being an informaticist, means that I also would like to see ALL my health data. But from the perspective of the CARE-GIVERS, implementing electronic systems is very expensive, very time-consuming, and (unless someone can show me evidence to the contrary) does not necessarily improve outcomes. It may save money in the long time in terms of efficiency, but it’s a tough sell to a CEO to say that up-front investment of $30m is required to save you $300,000/year in perpetuity. :)

I also spent 10-15 years self-employed so I know what you mean about that too.

If we can get the cost down to almost zero, like downloading a bank statement, would that resolve the concern? Would you then be inclined to let people take them for free, themselves, by logging in to some imaginary web site, like today’s bank web sites?

Good discussion.

Second, in response to your question – “I understand and support the professional’s desire to be compensated, but are you saying that didn’t already happen?” – yes, that is what I’m saying. I provided services to the patient and for those services I received my regular fee. But I am a self-employed professional and I my income is based on my time. If I have to spend 30-60 minutes reviewing and copying a file, am I not entitled to expect some compensation for that? I don’t expect to recoup my regular hourly rate because quite frankly I know that’s not going to happen. But it is my time that’s providing those copies and, yes, I do feel that I am entitled to some compensation for the use of my professional time.

I understand and support the professional’s desire to be compensated, but are you saying that didn’t already happen?

And if you want to get into “$1 a page is pretty cheap” then let’s start negotiating price. How much is “a page”? Want to set a price on the individual facts? Are you pricing based on how many pages you took to generate a given amount of information?

If you keep your records electronically in a system that knows how to export (a process that takes seconds) then does your reasoning about “someone has to make photocopies and send them” fall apart? It sounds like the banking business ten years ago, where copies of printouts had to be made. Ten years from now when medicine has caught up I hope your thinking would adjust accordingly.

But even today, since you’ll still have the originals, are you basically billing us just for the copy? When my chorus buys copies of a song for training purposes it’s called the “mechanical license” – are you asserting similar copyright on your writings?

Most of all, if you would withhold that information, extorting cash, because I need to get care elsewhere, then I don’t know how you sleep. (What do you think about Texas’s $37 for ten pages?)

All I know personally is, if you want to price your work that way, go ahead, but I’ll go far out of my way to avoid such practices, and I imagine you’ll find an ever-decreasing number of patients who’ll tolerate that business model.

The health professional is required to maintain the original records for a lengthy period of time, varying with the jurisdiction but typically 7 to 10 years, If you request your records, it is not an option to simply ship the originals to you. Rather, somebody has to make photocopies of the records and send you the copies. Either that will involve the time of the original professional, in which case s/he is entitled to some compensation for that time, or by an employee of the original health professional, in which case that employee will need to be paid.

There is one additional factor: When it comes to records of mental health issues, the access to records legislation in most jurisdictions allows for exemption of certain records that may be damaging to the emotional or mental health of the patient. While those exemptions are rather striongent and subject to challenge, it does mean that somebody with professional expertise needs to go through the records to decide whether anything in the records might be deemed to meet the criteria for exemption. That’s more time.

When you look at all these factors, I’d say that $1 per page is pretty cheap.

1. “Paper can be locked in a cabinet – problem solved.” Um, no; what about the recent well publicized cases of paper records being found in dumpsters, or, as happened, in Boston, a big folder of them being left on the subway?

(I won’t delve into the issue of paper records and x-ray films getting lost, because that’s separate from the privacy issue. But records being misfiled sure as heck affects my ability to count on my records being available when my life depends on them. That’s one reason I’m very happy to be at the Halamka/Levy/Sands hospital.)

2. Re regulation: I’m no expert in government policy, just one random schloompf who depends on having this stuff work. But I have to say, if someone wants to provide a service without regulation, they should get out of the health care business and become a securities broker instead.

Oops, except I don’t think that one worked out very well.

3. General, again: As someone too naive to understand the complexities of policy, it’s always seemed to me that the first test of how something’s been set up is, is the job getting done? For things like road maintenance the consequence affects potholes and car abuse, so “the job’s not getting done” is not generally a desperate issue. (Exception: bridge collapses.)

But in the case of healthcare, LIVES are at stake, people! Policy discussions that don’t focus on “the job to be done” are way, way off base in my view.

1) Paper is a completely different world than electronic when it comes to health information. Paper records can be locked in a cabinet – problem solved. There are also not the same requirements vis a vis hipaa as far as auditing or electronic signature and many other things. Basically from a compliance standpoint it is about 100 times easier and less work/money to stick with paper.

2) The other issue with electronic systems is not giving a patient access to his or her OWN data, it’s giving access to a patient to another patient’s data, or any other person. Once you go electronic you open yourself up to liability that is inherent in ANY ELECTRONIC SYSTEM but unlike in other industries if you make mistakes the potential downsides are enormous.

But then again, I would also suggest, that there are so few EHRs to which patients have access, that it’s not surprising that the literature in this area is sparse.

So this is highly speculative, but it would seem to me that giving patients access to their lab results (viz. the Palo Alto Medical Foundation application) would help avoid the situation reported by Casalino et al recently in the Archives of Int. Med. where on average 1 in 14 abnormal results are either not reported (or are not documented as reported) by physicians. The range of failure rate is from 0 to 1 in FOUR ( a heads up to the patients in that practice may be in order). Now, I’ll admit that better workflows would help to address this issue. But I think that there are just enough jaded patients out there, that the “trust me I’m taking care of this” attitude doesn’t cut it any longer. One instance where quality of care could be impacted by access.

Security is an issue undoubtedly. Funding the project is a huge issue, as is ensuring “actors” assume appropriate liability; but I’m not sure that anyone’s arguing those facts. The issue is getting agreement in principle and then collectively working towards the same goal…better quality care.

And those breach notification requirements that you reference? They apply to paper records as well.

It’s hard to see how either of these requirements provide disincentives to moving to electronic records since they are “media-neutral”.