Would You Like to be Engaged to Multiple EHRs?

There’s strong agreement that for meaningful use of Healthcare IT, patients and families need to be “engaged.” The question is, how? In Stage One, patients are to be given an electronic or paper copy of clinical summary information from office visits and hospitalizations, as well as discharge instructions from hospitals. This is good and a step beyond mere paper. But that raises the question of how this information can be used by the patient, other than viewed as if it were paper. What’s the “Quicken” equivalent of a “killer app” for patients to manage their health? (Oops, maybe “killer” app is not so good for healthcare…). The Stage 2 Meaningful Use Request for Comment proposes that patients be able to view and download their information from a “web based portal” that is a module of an EHR (considering that the incentive program is about “certified EHR technology”).

The best tool for any given patient depends on the individual, so speaking in statistical terms may gloss over some things. But let’s suppose that all EHRs were to offer such a portal. How many of them would a patient need to access? For myself last year, that would have been five (four EP and one hospital). According to an article by Peter Bach of Memorial Sloan Kettering Cancer Center, the typical Medicare patient sees seven doctors in four practices in one year, and those with multiple chronic conditions saw 11 docs in seven practices in one year. If you then throw in a hospital, that means eight healthcare organizations possibly with eight EHRs for one patient in a year. If you’re a family member caring for your children or aging relatives, multiply all that. You might have to interact with more than 20 web portal accounts, ending up with over 40 separate downloaded files (you’d probably need more than one per organization per year). Even if they’re in a standardized format, who or what will reconcile or pull them together? Will you be the one, using copy & paste with a spreadsheet or word processor? I don’t think so… If you use a web-based tool specifically designed to deal with those files, well then you’re probably using a Personal Health Record (PHR).

The problem with the current MU proposal for downloading from individual EHRs is that it implicitly endorses a “tethered PHR” model – a PHR extension of an EHR. But that PHR is not really patient-centric, because it contains the patient’s data from the organization using the EHR. Over time, the data will broaden as EHRs import and reconcile data from other sources such as EHRs or Healthcare Information Exchanges, but most EHRs aren’t there yet. And “tethered” is only one of several approaches to patient-centric health records. Other flavors include independent personally-controlled PHRs such as Microsoft’s and Google’s; health record banks; payer-based PHRs such as Blue Cross; employer-based PHRs such as Walmart’s using Dossia. They all have their strengths and weaknesses, but the personally controlled PHR has recently made some significant headway, associated in part with the Direct Project announcement re Dr. Paolo Andre’s EHR and Beth Israel’s Direct Push to Healthvault. If independent PHRs can be updated through a standard transport protocol (Direct secure SMTP), that securely pushes standardized content (e.g., CCD or CCR) into the PHR in a way that is structured and codified, as already required in Stage 1 MU, then the potential for a comprehensive, patient-centered record (not tied to any one provider) has increased. Now this isn’t magic – the patient or family member still needs to decide which data from the CCD are relevant and should be added to their master problem list, medication list, etc., as I’ve done with my own PHR. An ecosystem of innovative products (trackers, monitors) can then flourish around the PHR, given the influx of more robust data to operate on.

In preparing comments to the HIT Policy Committee’s Meaningful Use workgroup, I’ve recommended that MU should focus on the goal: getting the information to the patient or caregiver’s hands in a way that they can use, not on inadvertently favoring an EHR-centric “tethered PHR” flavor. Let the EHRs do the behind the scenes work of transmitting the patient’s info into PHRs of the patient’s choice (which might be any of the flavors I mentioned), enabling patients to interact productively with a tool they like, rather than making them “polygamously engaged” to multiple EHRs/portals and encumbered with lots of files to manually import into PHRs. For patients who don’t want to use a PHR, they can still get their electronic copies (as in MU Stage 1). But for those who want the opportunity to have their electronic information together in one place, there’s a great opportunity for MU, defined in a way that allows flexibility and innovation, to leverage the Direct Project and the existing and emerging clinical content standards like harmonized (I like that word) CDA Consolidation Project templates building upon CCD/C32.  

So, patient and family engagement: yes! Let this relationship between patients and HIT be productive, patient-centered, simple-to-use and... engaging, please!

“Quickening” the Flow of Health Information – Part Two

Sometimes you just have to be quick. And I wasn’t, so Part Two is later than I planned. Here are some more analogies between Quicken (which I use for my “Electronic Financial Record”) and an Electronic Health Record inasmuch as both require information exchange. Of course, “money” and a relatively small data set are exchanged in financial transactions, rather than the vast array of health information. So with that caveat, here I go.

• Making payments is analogous to Direct Project “push” messages. I enter payments that are pushed to payees in a format that they can accept (some electronic, some paper checks). I can enter these payees’ addresses or have Quicken look some up in a directory. My interaction is simple, but Quicken and the financial network (like a healthcare HISP) securely route the transaction behind the scenes.
• Quicken updates my register pulling relevant data from my bank. To me, the bank is analogous to a Healthcare Information Exchange in that it received and aggregated transactions from many payees, so I don’t have to connect to all the payees. I can download from the bank as needed. Of course, the bank has security and privacy protections for my data, similar to how health data must be protected.
• Balancing my register, which occurs automatically, is comparable to data reconciliation in an EHR (though it is much much simpler for money than for health data!)
• I can set up automatic actions such as reminders and payments, which is analogous to workflow automation features in healthcare, where events (like signing a letter or discharging a patient) can trigger data to be transmitted to others.
• Quicken interfaces to tax preparation software such as Turbo Tax, which then files taxes with the IRS and state. This is analogous to healthcare transmissions to public health and quality reporting agencies.

The bottom line is that I use Quicken because it saves time and money and helps me do things that would be hard to do on my own. Just avoiding the late fee on one credit card bill pays for the software investment. I’ll surmise that healthcare providers would insist on those kinds of benefits and more. If a provider can have an EHR that can do more than just the electronic equivalent of FAX -- like quickly match and autofile incoming messages to the right patient, help reconcile the data, notify the user that new information is available, provide clinical decision support, improve efficiency  – that EHR would ultimately pay for itself with or without incentives. All of us who work on EHRs need to keep that in mind: if my professional livelihood depended on using this EHR, would I use it? Personal Health Records (PHRs) are an even closer analogy to Quicken, and I believe that they too need interoperability and Quicken-like value to deliver on their potential (rather than being something that most consumers don’t have time for).

Interestingly, Dr. Clem McDonald (an HIT pioneer) recently  wrote a similar analogy, that ideally healthcare data import ought to be as easy as importing bank statements to Quicken, in his commentary Clinical Decision Support and Rich Clinical Repositories in the Archives of Internal Medicine (sorry, the link used to be public but now requires membership).

To wrap up… securely pushing information, as simply as e-mail, is good progress. Liquidity of information, whether health or financial, enables value to be realized when software acts upon it. Financial software has progressed far beyond just moving information. Healthcare isn’t nearly as far, but it’s advancing and more options are becoming available. Not all EHRs are right for everyone, but I believe that they’re on the road to being as if they were “healthcare Quickens.”

"Quickening" the Flow of Health Information -- Part 1

Yesterday was a big day for The Direct Project, which I’ve been pleased to be able to participate in. Kudos to those who have started demonstrating successful “pushing” of communication of clinical information across providers! As pointed out by many speakers, it’s great to see collaboration for the common good among many organizations that are competitors in the marketplace. There’s a quickening momentum as the trickle of information exchange grows to become a flood.

As ONC's Dr. Blumenthal aptly said, The Direct Project is “a lane in the information highway.” What he didn’t say was “but it’s not the cars, passengers, or cargo being transported down the highway.” That’s an important distinction that not everyone may realize, since the pilots really showcase much work that is outside the scope of Direct, such as “integrating patient data across provider settings and during transitions of care” as one pilot announcement said. Direct was used to transmit the data, but didn’t integrate it, because it’s the highway, not the cars or the place that the car is going to. It’s secure transport, not data content nor use of the content.

One beauty of Direct is that it is unbiased, neutral, toward the content it is transporting. It uses established standards to securely deliver any content to the right place so that only the intended recipient can read it (it’s an honest mailman who doesn’t read your mail). But the content had to exist in electronic form before Direct can encrypt and send it. The data could have come from EHR, or a scanner, or a person typing an e-mail message, but someone or something created it first, and someone else (not Direct itself) does something useful with it on the receiving end.

To the extent that something wonderful is done with the data that’s being sent securely through Direct, that’s done by innovative and usable applications of one sort or another, and while Direct didn’t make those applications, it sends them something to work with. Applications analogous to Quicken. Why do I say that? Well, I’ve often heard the healthcare industry unfavorably compared to other industries like banking, where everyone lauds the benefits of their interoperability through ATMs and the ability of banks to download data into personal financial software like Intuit's Quicken (which I’ve used for years). I'm sometimes skeptical of such comparisons because health data is so different than money. Nevertheless, there are some very useful parallels.

If my connection to the bank securely delivered images of paper bank statements as PDF files, and images of checks, it would have some value by saving postage, trees, drawer space, and a little time. But no one would be satisfied with only those benefits today. My account data is not just delivered as images of checks or my old monthly paper statements; it’s delivered in a discrete “consumable” form that I can use to write checks, transfer money, set up automatic payments, manage a budget, analyze my expenses, search, import into tax software – all while my ledger is automatically kept up to date and saves me from having to do the dreaded “reconcile the checkbook” chore that I thankfully abandoned long ago. The semantic standards are pretty basic compared to healthcare – we agree on dollars and cents and dates and times, not so much on the payees (I realize I’m oversimplifying).

So my message to end today’s post, which I’ll follow up with part 2 in another day or so, is that the flow of health information is quickening, and I’m happy that the Direct Project is playing an important role in doing that. But it’s health IT's Quicken counterpart at the other end that makes it really useful. I believe that to get the most value out of secure health transport, we need to increasingly send content that is human-readable but also appropriately structured and consumable at the receiving end. Deciding what that content should be is work for other projects ahead. Whatever it turns out to be, the Direct Project will help push it quickly where it needs to go.

"All the World's a Stage"...Two

”All the world's a stage,

And all the men and women merely players:

They have their exits and their entrances;

And one man in his time plays many parts,

His acts being seven ages…”

[As You Like It, William Shakespeare]

Oh no, as if music analogies weren’t enough, now I’m quoting Shakespeare? Actually, I’ll confess that I’ve never read As You Like It but I thought of these lines in the context of Healthcare IT and Meaningful Use (MU) Stages. The monologue quoted above goes on to list seven “ages” (which we would call “stages”) of life: infancy, childhood, the lover, the soldier, the justice, old age, dementia/death. I think HIT has gotten beyond infancy, probably into “childhood” and wants to grow more mature with each Stage (stopping well before dementia and death, of course).

The eyes of the HIT world are watching the “players” from the HIT Policy Committee, who are proposing Stage 2 MU which will start in FY2013. When it’s defined, will it be “as we like it” and will we believe it is taking us on the right path? What’s the vision and strategy to which Stage Two is a stepping stone?

Most of us indeed play many parts (roles). For instance, with respect to HIT, I ‘m a public citizen commenting on regulations, standards developer, interoperability champion, product developer, PHR user, patient, and caregiver. The dedicated people on the HIT PC also play many parts  simultaneously, which may include clinician, developer, researcher, business executive, standards developer, and of course policy maker and patient.

Before submitting detailed comments, I want to share some themes and associated issues that I gleaned from my initial reading of the 19-page HIT Policy Committee Meaningful Use workgroup’s Stage 2 recommendations.

• There’s more recognition of the need for evidence to support objectives. A little over three pages of references are given, though I wish that there were more explicit connections between each objective and the citations. Consider that regulations that affect thousands of providers, hundreds of vendors, and millions of patients have high stakes. So it’s reasonable to expect evidence not only of benefits but of associated costs including impacts upon workflows. The public comment period will undoubtedly cause more evidence to surface (and I encourage everyone who comments to include evidence as to why you agree or disagree, not just assertions or emotions).
• There’s a broader view of the clinical team. I see progress towards a balanced perspective with the focus on medication administration, assessments, longitudinal care plan, and care team members, though there’s a lot of room for interpretation as to what the last two mean. There’s also more clarity of clinical/discharge instructions in Stage 2. It’s good to see the acknowledgement of other professionals such as nurses, pharmacists, and therapists, in addition to physicians.
• Patients are increasingly considered part of the team. I’m all for “engaged” patients and consider myself one. The most challenging Stage 2 objective for patient engagement may be the patient download-upon-demand feature for all EHRs. What do patients want out of the data and how does it improve their health? I’d like to see this addressed in the Evidence Base/Rationale section.
• More and more information will be exchanged. That’s no surprise, and can be a good thing for patients and providers, if…it’s usable and relevant, as I wrote in my three part December series starting with Information Liquidity. As stated by Dr. Lyle Berkowitz who gave testimony to the HIT Standards Committee: “Data sharing alone is never enough. Dr. Reid Coleman from Lifespan had the quote of the day when he said,   ‘Data is like salt water… you need a filter to drink it’. I’d also add that it helps to have good plumbing to connect it to the right facilities, and then also to have plenty of glasses available to make it easy for people to get it to the ‘final foot.’”

The Policy Committee has a tough tightrope to walk – on the one hand they’d like to wait for more early returns, evidence of how the industry is doing adopting Stage 1; they could then incorporate those experiences before finalizing Stage 2. On the other hand, they have heard that everyone need lots of lead time to work Stage 2 into their roadmaps, and needs its requirements finalized “yesterday” or at least 18 months beforehand. So they’re trying to send a “signal to the market” but they can’t guarantee that the signal won’t change. They’ll probably receive hundreds of comments. Interesting times lie ahead!

Philosophizing

Now that the HIT Policy Committee Meaningful Use workgroup’s Stage 2 recommendations have been released for public comment (due February 25^th), I and probably hundreds of others will give it a careful review and offer public comments. I know that a lot of thought and balancing of considerations from public testimony has already gone into it. The “philosophical basis” – the “why” not just the “what” -- of MU is fundamental to what is included and how it is specified. I hope to look for what lies behind the objectives. Some of this comes out in the workgroup’s meetings (which, along with the HIT Policy Committee meetings, are open to the public, so I encourage you to participate). However, the “intent” behind proposals is not always evident in the documents themselves, and readers who didn’t listen to the meetings might not be able to read between the lines to understand what outcomes the workgroup is striving for. Presentations from prior meetings can help explain the guiding principles more than just reading the proposed objectives. I believe it really is about better health outcomes for all of us, including the currently disadvantaged. 

In the meantime before I’ve analyzed the recommendations, what should I blog about? I’m humbled by the consistency with which other bloggers manage to write daily (I wish…!) since it’s hard for me to find time, let alone good ideas, to share daily. In that regard, my son Dan sets a high bar for consistency as he writes his blog, The Philosopher Developer, almost daily. Similar to my combining thoughts on HIT and music, he combines his vocation (programming) and his avocation (philosophy/thinking). While it’s tempting for me to say “like father, like son,” Dan started his blog a year before I did, so I should say “like son, like father!” His January 15^th post on “Resolution: the need for a terminating condition” is sound advice to us all as we engage in discussion and debate about the right path forward in HIT, health reform, family issues, or anything else, such as the Arizona Tragedy. Hopefully, there can be a harmonious environment and humble attitude framing our discussions, even when we disagree.

Back to Health IT. It’s clear that increasing patient engagement in health is one of the main drivers for Stage 2 and 3. I look forward to the day, not too far away, when I’ll ask each of my healthcare providers, as meaningful users, to share information with me as a patient or possibly a caregiver, per the regulations (electronic copy, access, download, secure messaging) or beyond that if they can. My HIT work won’t be a compartment that I leave behind at the office, but a reality every time my family or I interact with the healthcare system. Like it not, that’s likely to be more and more often for me for the rest of my life.

An Aid to Survey the River of Clinical Information

Recently, I’ve had discussions with many people in the HIT industry about the future direction for Meaningful Use (MU), especially about exchanging clinical information. It’s clear that Stage 1 is only the start of a journey, and that increasingly robust sets of clinical information will need to be exchanged. However, such exchanges need to be helpful rather than burdensome, and much work needs to occur to figure out how to display what’s significant, accurate, reconciled, and usable for clinicians and patients (see my recent blog series Part 1, Part 2, Finale).

I’m sharing a spreadsheet (a work in progress) showing a library of standardized reusable data sections and comparing many types of electronic clinical documents/records, including the two most “famous” that are required in Meaningful Use Stage 1, CCD and CCR. This spreadsheet may eventually be published in a more final form from an organization, but even now it may be useful to you if you have any of these questions:

• What must be shared in Stage 1 as a clinical summary with providers and/or patients? (See spreadsheet columns B and D green cells)
• Are certification and MU clinical summaries the same? There are some interesting differences that can be found between the standards for certification and the language for meaningful use (See column A and the CMS FR – Clinical Summary tab).
• What’s the difference between a full C32 and what’s required in Stage 1 certification? Quite a bit, actually! (See column D, white check marks)
• What data are not included in CCR and CCD but might be desirable to share in the future? (See all rows and columns). Stage 1 requires only the most commonly requested clinical summary data (meds, allergies, problems, results, etc.).
• How much reusability exists among today’s electronic clinical documents? (See column Q, which also indicates which sections are most often used). There are worthy efforts afoot to improve commonality and reduce divergence, such as the ONC sponsored CDA Consolidation Project. 

Here’s my compulsory “liquid” or “music” analogy of the day. A mighty rushing river is growing, of clinical information and the standards thereof. I hope my high-level spreadsheet serves as an aid, a “Bridge Over Troubled Water” where you can safely survey the river before you plunge in. Although I created this spreadsheet, with plenty of review from Health Story and EHRA members, I’m far from being the authority on clinical documents. Robin Raiford did wonderful work on a similar spreadsheet in 2009, which was actually more detailed, but was limited to HITSP CDA documents and preceded the ONC Final Rules. I recommend that you read the original specs, and follow Keith Boone’s blog and his upcoming CDA book.

The Arizona Tragedy and Harmonious HIT

I was shocked, saddened, and angered by the news of the recent assassination attempt on Arizona congresswoman Gabrielle Giffords and the killing or wounding of 18 other innocent bystanders.

What does this have to do with healthcare IT? A little. I am very grateful that it looks as though Representative Giffords will survive. Undoubtedly, an amazing amount of medical technology as well as skilled and compassionate healthcare professionals were involved in the surgery. Without both the technology and the  people, she certainly would not have survived. And both will be needed continuously if, as expected, she faces a lengthy and arduous recovery, long after the headlines have faded from our memories.

What does this have to do with "harmonious?" A lot, actually. Jared Loughner is not talking at present, and it's too soon to know what really motivated him to commit such a horrendous crime. Still, I'm reminded that words as well as bullets can wound deeply. It's ironic and sad that a subject such as Healthcare Reform, and to some extent Healthcare IT -- both intended to improve people's lives -- are sometimes debated with such rancor and acrimony in public forums, e.g., on the Internet.

I hope that the discussion of legislation, meaningful use, certification, standards, and all other subjects related to healthcare, and HIT, will be conducted in a rational civil manner. When we feel strongly about the rightness of our cause, that's great: we should exercise our privilege of free speech. But with privilege come responsibility, and we don't need to fire off verbal bullets or grenades with shrapnel, as if others are merely "targets" and not real people. Rep. Giffords, the other victims, and all of us deserve no less as we try to work together, harmoniously rather than dissonantly, to improve the health of our nation and our people.

This may be too "preachy" a blog post, but the Arizona tragedy affected me and made me think again about the reasons I got into the HIT industry in the first place. How can I and each of us contribute to making things better?