Open Letter to PHR Developers, Practitioners, Payors, and Patients - All Aboard

“He who refuses to embrace a unique opportunity loses the prize as surely as if he had tried and failed."

– William James, American Psychologist

First, dear ones, I must apologize.

Thought I'd covered PHRs, EHRs, EMRs etc. just about to death.

Before my loyal Health Management Rx readers (all 4 of you) call a code, let me reassure you this is the last little bit of coverage on the topic for awhile.

I thought I'd gotten everything out in this week's earlier post, gracelessly titled "Waiting for the Killer App and Why I Don't Give a &^$ About PHR Security."

The thoughtful, well-composed comment left by Ian Furst of Wait Times, however, deserves a thorough response - et voila.

I had no idea my reply would be so *cough, cough* lengthy. Probably much of what's said here isn't unique, so no originality points - but after some research I couldn't seem to cobble together disparate data bits enough to get a synergistic piece out of the whole deal.

I sat down to write a comment that filled in the gaps and 8 pages later realized I had maybe a little something.

I did consider breaking up today's entry into series of shorter responses. As most bloggers have figured out, series drive traffic. Series provide us with fodder for a week (!) and let us draw some small, mean measure of joy in stringing along our audiences for a few days (most of us blog for passion not paychecks, so forgive us our little peccadillos).

A series would've made the whole shebang easier to swallow, but the theme would lose momentum in a piecemeal cut-and-paste translation.

Bear with me, dear readers. There are things here that need to be said.

First....Ian - Great, well-thought out response, and thanks for it.

You hit it spot on with your comment earlier this week.

First, let's establish some common ground:

No matter how we record, share, distribute, and revise healthcare data (or with whom, or where), the main goal of portability options must be to keep our eyes on the prize - ensuring quality of care is delivered at the highest level.

Personal health applications (PHAs) must move us toward this safe (efficient) and empathic care spectrum, which is the primary concern of the consumer-centric movement, Health 2.0 etc.

Ian, I share your belief that the main problem blocking widespread PHR use (and consumer-centrism/Health 2.0 evolution in our healthcare system in general) is a series of compounding errors based on misplaced needs to be proprietary.

Vendors feel they need proprietary tech.

Doctors feel they need proprietary notes.

Conversely, many patients don't want to be proprietary (or don’t know how to be proprietary) with their healthcare data. It’s certainly true that some don't want the responsibility.

But some do.

Some patients DO want to be proprietary about our healthcare data, and we have to fight for the option to have a meaningful, proactive relationship with our care providers (and certainly our payors) in sharing/holding/accessing that information.

We CAN access that material - many of us don't, and when the rest of us try, we find it's near impossible to obtain.

Actually, our protectionism may be aroused by an emotion other than possessiveness - fear.

Actually, all these segments (payor, provider, patient) are more than a little afraid of the responsibility we'll have to share when PHA use is more widespread.

Let’s not underestimate both the scope and complexity of consumer-centric care, of which PHA development is only a small part…it’s definitely a wicked problem.

Make no mistake - this is a paradigm shift.

Customers want this but don’t know how to voice it yet. Watch consumers in our native environments. The more vocal of us are beginning to let you know it’s time for a change.

A bit about the current PHR/EMR ‘big players…’

Ian, I sure don't trust Microsoft either, which is why I'm not using their Health Vault PHR offering.

'Big players' entering the consumer-oriented PHR space are too big – I don’t trust them to develop something that isn't collecting and selling my data on the back end.

As for the big medical/healthcare EMR vendors, of course they've a vested economic interest in keeping all platforms proprietary and non-communicative. How else can they reach quarterly sales goals?

This is why I implore software companies and Health 2.0 startups to be the first-movers in developing a cross-communicative PHA (personal health application).

As to why a physician won't just develop the solution - again, you hit the nail right on the head with your comment about wanting to keep things proprietary.

You (correctly) observed it would be a nightmare to have patients critiquing your every note.

Even as a hyperinvolved, educated consumer of healthcare services who knows her docs well, I don't critique their very note - much less in real time - that would take 5x his/her current availability for an office visit, and I am in no way qualified to do so! However, I DO scan my chart each time I visit the doc.

This 15 minutes of reading does me more good than perusing holiday recipes in the latest issue of Good Housekeeping, that's for sure (although GH does have some really tasty menus).

And while I do, very occasionally, point out an error in my chart (a note after ankle surgery describing a complaint of “injured lower back building a snowman” for example), the underlying purpose of my review is to learn more about my care and prognosis, which helps me realistically make decisions about how I choose to access future services.

I want to thank you also for sharing that some charting is done solely for practitioners’ legal protection, rather than to provide continuity of care, to establish documentation on history and patterns in case later litigation should occur.

You're right that not many people are talking about the legal aspects of record co-creation and co-ownership, and I think it must be part of the conversation. But let's get someone in on this who knows what in tha' tarheel they're talking about - Bob Coffield, I'd love to hear you weigh in on this one.

I get that there are things docs don’t necessarily want to share with patients (and aren’t required to reveal by law).

This brings up another point, however.

If you as my physician have a difficult time talking relatively openly with me about what you're putting in my chart, how can we establish a productive relationship built on trust?

How will we have a two-sided conversation about my concerns and wellness goals?

How will our visit, in person, help you provide better care than a quick internet chat or email exchange?

How will you as a care provider help me learn more about ways to improve my health?

If you aren’t being open with patients about charting, especially with those of us who ‘want’ to be involved, you’re asking for trouble.

Trust is an essential part of the patient/physician relationship. If I don’t trust you to be open, this could have a destructive, dampening effect on our in-office conversation.

Say I pop in for a visit because I have an infection.

Yes, it’s certainly true that even if I don’t trust you as a doc, you could scratch off a script that might heal my infection, but I might not feel comfortable telling you that's the third staph infection I've had in 2 weeks, which could signal an underlying condition that you’d then be more likely miss, unless of course you’re House, MD. Then all you'd need is a cane, some Vicodin, and a Ouji Board.

You're absolutely right that this will be a major change in thought process for many physicians, who dictate TO rather than conversate WITH the 10% of patients who want to be participatory partners in care (although I think we’ll see this 10% increase to 20% or so as more consumer-centric technology changes the way more of us interact with healthcare systems).

Unfortunately, I also think the idea that charting for legal purposes rather than continuity of care protects you from patient review of that data engenders a false sense of security.

If a patient brings suit, you'll have legions of lawyers reviewing those notes, which, I daresay, will bring a far more onerous set of questions than most patients would introduce at the point of care intersection.

And, ahem, the legal system will be sure to determine whether or not a patient-controlled record has been integrated into that patient’s spectrum of care at any point (and more importantly, whether that data was seen by a care provider).

We’ll start hearing lawyers asking about whether or not patients kept a PHR in court cases – setting legal precedent is a slow process at times but again, in cases of liability, I think discussion of PHR use and ownership will happen sooner rather than later.

We put people on the stand and ask them questions – we go through the discovery process. Questions about creating and accessing a patient-controlled PHA will be part of this process, no doubt about it.

This is NOT as new a scenario as some would have it seem – many patients with chronic conditions already keep a detailed list of procedures, medications, and treating physicians.

It’s sad that for many of us the usefulness of this list is limited - it's still trapped in a Word doc or Excel spreadsheet. The physician currently doesn’t have access to, control of, or responsibility for these handcrafted PHRs, but in cases where medical liability claims arise this information is a part of the case nonetheless.

With regards to the argument that few physicians, especially cash and time-strapped solo practitioners, can't make PHRs (or EMRs for that matter) work effectively, of course they can’t!

A simple, web-based PHA with secure login not unlike our online banking access hasn’t yet been brought to the market!

This is a challenge people, an opportunity! The gauntlet has been thrown by the likes of Google and Microsoft.

Although this is a symptom of a rational, logical state of resistance, particularly for physicians in lower-paying specialties, it is also a good commentary on how effective a PHA will need to be (and how it must be easy to use – ideally requiring nothing more than web access and a printer) in order to secure high use rates among physicians as well as patients.

Often we forget that the consumer base for PHAs is NOT just the patient or just the physician, but BOTH parties, and the successful PHA must provide a platform for BOTH types of customers to interact with the SAME personal health data.

Added benefits of redundancy gained during repeat H&P interviews doesn’t disappear with PHAs within the system I’m envisioning – docs still review the H&P with patients, but patients have a PHR at the ready to provide a common platform for furthering the healthcare discussion.

Also, let’s not forget, when I have a PHA where I can input data at my discretion, I am better prepared for each visit with a healthcare provider, whether that visit is planned or unplanned.

When I can add information to my personal health application outside the pressure-cooker atmosphere of the docs office, I’m likely to add things I might forget to tell my care provider in the heat of the moment, like the fact that I’ve twice tested positive for mono and continue to periodically test positive for reactivated Epstein Barr – as a result I can’t donate blood without prior testing.

Furthermore, if I have a personal health application that I keep relatively up to date, and God forbid I’m in an accident that incapacitates me, a catastrophic event – my spouse, partner, family member, etc. may be able to access that data and bring it to my care provider’s attention (if I've chosen to share secure login information with them, of course).

Back to the impact of PHAs on docs for a few moments…

This is the most blunt way to put it...

Docs: At some point it will be 'evolve or die.' Phrased in kindler, gentler language, that’s ‘adapt or become obsolete.’

That point may be 20 years off, it may be 50, or it may be 2, but it is coming.

Here’s how I think it’ll progress – you won’t be able to get paid if you haven’t evolved to daily use of an integrated EMR/EHR/PHR system.

Plus, using PHAs now, as an early adopter (EHRs in particular) might even make you more money.

Following CMS’ lead, HMOs are refusing payment for certain ‘never events’ including wrong-site wrong-surgery and falls.

How long do you think it’ll be before they’ve negotiated agreements/partnerships with EMR and PHR providers (and ancillary access ‘gateways’ like American Well) and qualify whether or not YOU as a care provider, get paid, based on whether or not you adopt the system they’ve partnered with?!

I don’t know why more payers aren’t already jumping all over PHA development as a cost saving solution.

Even if I’ve had a break in care coverage, at least my information can make a transition.

Will this transition make your practice obsolete in 20 years? Or will it take 7? 5? 2? I think it depends in part on how quickly the HMOs react, and their rate of ‘innovation’ is increasing rapidly.

Look at how quickly insurance companies have begun to offer pilot programs to test medical tourism as a cost-saver and domestic efficiency-sledgehammer.

Despite my pushes for virtualization, Health 2.0 (3.0, 4.0) and consumer-centric medicine, I certainly don't want American megacampus hospitals and the involved physician to go the way of the traditional travel agent – a position now not nearly as numerous nor ubiquitous as it once was.

Another excellent point you make Ian ...we shouldn't, you're absolutely right, underestimate the importance of national standards and a unifying data identifier.

But central repositories in American medicine aren't working.

Portability of information, in the hands of the only TRULY portable portion in the system (the patient), is the only way to get things moving past the logjam that is our current disconnected state.

We're more likely to see 10% of consumers, the 'hyperengaged,' changing the system than we are to see programs like CCHIT certification (of which I'm a big fan) gain major traction and push adoption of EHRs, PHRs, etc. to 30-40%.

Let's take the travel agent example. When online travel booking was first offered, only a select few adopted it. Travel agencies noticed small, sequential dropoffs in business, but were able to keep doors open for a number of years. For almost a decade most consumers still used travel agents and brick and mortar interactions to buy tickets and plan trips.

Now many more of us are comfortable booking travel online (I don't have exact figures but if someone wants me to chase them down I will). Yes, some of us don’t trust online payments, and we interact with travel planners still, sure, when there is a benefit and a need for us to do so (or when a website crashes, certainly a danger for web-based personal health applications).

Web-based travel didn't completely REPLACE brick and mortar interactions, but it sure did change the way many consumers access and purchase travel services, and the way 'providers' and brokers of those services interact with consumers.

Online travel provides us with the option to access services either virtually or in the 'real' brick and mortar business world. Well-designed PHAs (and I'm not sure these exist yet) will do the same for the healthcare sector.

Someday (soon?) we’ll take a look back and say it all started with people being able to compare prices online….

Again, I'm not saying force us all to use online travel, or a standardized PHA system. Just someone, please, give us the option.

I'm also certainly not saying developing the killer app will be easy - I'm not a developer or programmer, so I'm not overly hampered by the facts, and I know the difficulty of negotiating partnerships among companies who are highly protective of their proprietary APIs will be excruciating.

You're absolutely right that complete portability is complicated and expensive. But the population end-gains are worth the push to develop a multi-use PHA.

If we can give consumers, conservatively, something that makes 20% of us more likely to pay attention to reviewing our healthcare data and setting proactive wellness goals, then we've accomplished more towards moving the system to a point of cost-effective, 'proactive' care partnerships than any other healthcare initiative to date.

But again. Let's go back to the only thing that's going to change the system - it isn't just universal, federally funded healthcare, although perhaps that will increase brick and mortar access to services (remains to be seen - let's keep an eye on Massachusetts).

It isn't JUST practitioners changing viewpoints, and it isn't JUST getting consumers more involved (to the extent, again, that each of us chooses to be) - it's a combo meal approach.

You have to develop a little bit of something for everyone to make change in healthcare delivery sit well in everyone's tummies.

And to do that, you have to develop a PHA that allows us to interact with our data.

Put it this way: What is the ONLY common link between payers, providers, prescriptions, hospitals, and all other points in the brick and mortar (and virtual) healthcare management and wellness delivery system? The patient. Start with a PHA that is useful for the 'central node' and let us spread it throughout the CNS. Again - let each consumer embody your disruptive innovation.

Just as the first web changed online travel, the semantic web is coming – and it will save healthcare.

As for relationships between docs and patients - yes, they undoubtedly will change. This evolution has already started. There is no greater relationship in the healthcare system, and no other way to save it. This is my cause. Consumer-centric care.

Docs, you are consumers in the system, in addition to providers. Peer pressure motivates you not only to improve, but also to compete with each other and to question assumptions when interacting with other consumers (both fellow providers and patients).

Here’s a quote from the lively “comments” section discussion accompanying an excellent post on the Wall Street Journal Health Blog:

“Patients could show up and hand over their memory stick or an Internet address for the files, but doctors on the receiving end might be wary of believing what the records says. “It’s outside a protected chain,” Leiber says. “The second doctors are going to repeat those tests.””

Again, the argument that patient-controlled PHRs are ‘outside a protected chain’ is ludicrous.

It looks good in print but doesn’t have legs off the page.

Docs, just review what a patient hands you on a thumb drive as you NORMALLY would review a patient-delivered history during the typical H&P. We’re not disrupting the whole system of care here – we’re providing a new way for patients to interact with the data exchange portion system.

And anyway, how, might I ask, is this different from interaction and issues of trust and information portability in the current system? I’ve NEVER had a doc not repeat a test just because I said something along the lines of “hey Doc, I had a fasting glucose last week and here were my levels…”

Plus, docs and hospitals will still keep their own records.

What we’re moving towards as a result is a combo meal approach with caregiver maintained (and owned) EMRs and consumer maintained (and owned PHRs). The right innovative PHA that sparks innovation in a blindingly simple way will combine the two functionalities until we’re on the ‘one system, one platform’ approach. This 'one system' may definitely be 20 years out, but we'll see EMRs and PHRs in more common use within 2.

The right PHA, which I'm betting we'll see by 2010, will be in “consumer-speak” not in “medicalese.” It will look, act, and think like a consumer or end-user oriented SaaS offering.

And enough, enough, ENOUGH about the technical difficulties argument and the ‘non tech-savvy’ excuse.

We’re ecstatic about being able to send scans to cell phones....what about privacy issues with this service?

And good grief – we can figure out ways to monitor ICU patients remotely but not to get a good, consumer-centric web-based PHA going?

Let's try this...

Instead of trying to wrap your head (and heart, and wallet, and objective business P&L planning self) around the whole EMR, PHR cluster&^% - ask yourself one simple question, courtesy of John’s 4.29.08 post at Chilmark Research:

“As we move to a digital healthcare environment (it is inevitable), how will the consumer manage their records more effectively and more broadly, how will providers manage these records?"

That's a question more innovative minds should be trying to answer, and more VCs should be looking to fund.

Further Food for Thought:

http://blogs.wsj.com/health/2008/04/25/how-personal-health-records-could-make-care-less-efficient/?mod=WSJBlog

http://www.eweek.com/c/a/Health-Care/Web-20-Can-Give-Consumers-More-Control-over-Health-Care/

http://www.usatoday.com/news/health/2008-04-29-medical-records_N.htm

http://labsoftnews.typepad.com/lab_soft_news/2008/04/himss-president.html?cid=112569746#comments

http://chilmarkresearch.com/2008/04/29/the-digital-risk-of-medical-records/

http://3genfamily.wordpress.com/2008/02/29/google-doesnt-belong-in-the-health-records-business-heres-a-better-idea/

And If You're Not Totally Brain-Dead Yet & Really Want to Free Your Mind:

http://blog.p2pfoundation.net/video-infrastructure-communities-and-corporations-is-there-a-middle-way-between-open-and-closed-at-e-comm-2008/2008/04/30