Patient Engagement as a Two-Way Street Part 3 – Recommendations

In my last post, I spoke of the importance of “getting to know” the patient and asserted that knowing a person can’t be accomplished only by predefined questions. I also referred to the HIT Policy Committee and HIT Standards Committee’s request for comment on Patient-Generated Health Data (PGHD) for Meaningful Use Stage 3 (MU3). Four Siemens employees (including me) submitted comments on that blog last week. Here’s my own summary of the comments, stated as recommendations.

• MU3 should define criteria for EHRs to accept PGHD, initially in either unstructured or structured formats. (Note: “PGHD” should include data not only from patient but from their care givers such as family members)
• Encourage, but don’t mandate, structured data content standards. Define a clear roadmap for standards to come, compatible with data standards for EHRs.
• Clearly define provenance (data source) metadata requirements to inform providers so they can exercise their clinical judgment on how to use the data.
• Focus on relevance, being careful not to overwhelm people with too much data. Allow provider access to additional PGHD where needed.
• While in typical cases the patient is authoritative on many issues, the provider needs to exercise judgment as to trustworthiness in each SPECIFIC patient interaction.
• Avoid being overly prescriptive on which data to gather, but rather let patients say what’s most important to them. We “don’t know what we don’t know.”  
• Strive for wide adoption and low barriers to entry by evaluating and embracing a variety of data entry and viewing technologies most commonly used by patients
• Define clear purposes, expectations and responsibilities for the review and use of PGHD

PGHD is not new: much of today’s healthcare depends on it already. Still, in an increasingly mobile, connected, socially networked culture, there’s a lot more potential for providers to get to know patients better by collaborating with them through the two-way exchange of information. MU1 and MU2 are weighted toward a one-way flow of information from EHRs to patients, but the HIT PC and HIT SC are, commendably, seeking ways to turn this exchange into more of a “two-way street” with PGHD.

Patient Engagement as a Two-Way Street Part 2 – “Getting to Know You”

One of the purposes of patient-generated health data (PGHD) is to help providers know their patients better than they would have otherwise if they relied only on data captured by providers. In my experience, I appreciate doctors who do more physical exams and tests but know more about me that could help them personalize their treatment. As Rodgers and Hammerstein wrote in The King and I, “Getting to know you, getting to know all about you…”

So it is with PGHD. How can it help providers know us better? I worked with colleagues to write a detailed response, which you can find as a comment on the HIT Policy Committee and HIT Standards Committee's blog requesting input on PGHD. I’ll give some highlights in my next installment. The rest of today’s post, while alluding to that response, is my own opinion.

While a patient-provider relationship is special and not necessarily deeply personal, think about how people get to know each other in general. They talk! In ways that can’t be predefined, prescribed, or pigeonholed. Sure there are facts such as your birthday or address. But the vast majority of emotion, experience, and aspirations are richly expressed through natural language. Would you want to get to know someone by filling out structured forms with multiple-choice questions?! So in response to the blog question “does all PGHD for care management need to be in a structured form?” I’d answer a resounding “no!”  As one working in healthcare standards, I understand and fully support the need for structured data in EHRs, for interoperability, analytics, decision support, quality measures, etc. But even if we could magically get all PGHD structured, standardized, tagged, and automatically imported into EHRs, that wouldn’t necessarily make things great. Structured data has precision, but very little nuance. Very few patients think or communicate via structure, and no amount of standards or government regulation will turn patients into health informaticists.

So I suggest crawling before we walk or run when it comes to PGHD. Let’s lower the barrier to entry by embracing PGHD in whatever formats or devices (PCs, smart phones, basic phones with text messaging, etc.) the patients can create it. Yes, there should be a direction for standards so that appropriate data (such as med lists or glucose levels) can flow from patient-facing systems like PHRs into EHRs and be understood. But let patients express themselves in their own words and preserve this in their health record. And speak to them in plain language that they understand (which won’t be structured XML). Then we’ll have the kind of two-way street that will help my providers “get to know me” and deliver the kind of healthcare relationship that I want for myself and my family.

How Will Engaged Patients Get Their Comprehensive Health Information?

As I’ve blogged previously, I believe in the right of patients to access their data. Exercising a right is one thing: deriving benefit is another. The data needs to be usable for the patient or their caregiver/designee. Google Health’s demise, or the fact that patients very rarely ask for an electronic copy of discharge instructions or clinical summary (Stage 1 MU) doesn’t prove that patients don’t want their data: it’s not an “either/or” choice between having convenient functionality vs. having access to the data (see my thoughts here). I’ve made analogies (with caveats) to online banking before. But besides health data being more voluminous and complex than banking data, people usually don’t interact with nearly as many banks as healthcare providers. I as a generally healthy person have visited eight healthcare providers in the last two years, and 12 providers in the last five years. A person with more chronic illnesses would have more providers and far more visits. Will the increasing penetration of EHRs help us as patients? Specifically, how will I get my comprehensive personal health information when it’s scattered in so many different places, electronic or not? Connecting to each one individually doesn’t seem to be the answer.

Here are some ways that might possibly happen (with italicized comments indicating my opinion of feasibility and likelihood):

1. Private or public health information exchanges that connect all my providers (or at least a critical mass), aggregate and perhaps normalize my data, and which have a patient portal with view/download capability for patients.
   A few of these exist, so it may be possible for patients to get somewhat comprehensive information if they stay in the same region or provider network for a while and all those providers share data with the HIE
2. All providers’ EHRs pushing their data to my PHR. This could work with HealthVault, though I don’t know how many other PHRs currently support Direct protocols. The patient can receives separate standardized structured documents (e.g., CCD), but then has the option to merge and reconcile data from those documents into their PHR data fields.
   Unlikely in the near future, though technically possible to the extent that Direct Project becomes adopted and required in Stage 2 MU.
3. All providers’ EHRs making their subset of my data available to me to download, which I then upload into my PHR.
   This is theoretically possible if Stage 2 Meaningful Use continues as proposed by the HIT Policy Committee, but it’s a lot of work for the patient: adds the download + upload steps to the “merge and reconcile” step of #2.
4. Patient Centered Medical Home that aggregates data from multiple providers. Possible in pockets with PCMHs and strong HIE capability
5. All providers having all my data (due to comprehensive information exchange plus EHRs consuming and storing everyone else’s data) so that no matter which one I accessed, I’d have all my personal health info.
   Highly unlikely in the near future, since most EHRs can’t consume and store most of the data. Some EHRs can import some external data, such as medication history.
6. Virtual on-the-fly health record assembled from all sources (similar to the recommendations in the PCAST report).
   Highly unlikely in the near future.

I think #1 and #2 are the most feasible today, though the percent of patients who will actually benefit from them is still low. I’d be interested in your thoughts on what is most likely to gain traction and whether there are other possibilities that are feasible today that I missed.

How Would EHRs Matter to Patients?

In my previous post, I said I’d talk next about patient engagement functions that need EHR data vs. those that don’t.

No doubt, there are some “data-less” functions that can still be useful – you need little or no clinical data to request an appointment, e-mail your doc, or a refill (other than your Rx number). Here’s a list, undoubtedly incomplete, of some functions that I think are Not EHR-dependent vs. those that need (or greatly benefit from) EHR data. Several of the items below are “gray areas.”  

Not EHR-Dependent

• Personal Health Record (PHR) – untethered, if patient is willing to enter the data or settle for existing PHR data feeds (e.g., PBM med history)
• Patient self-service functions (e.g., schedule appointment, request drug refill, view clinical data, pay bill)
• Patient-provider communication and collaboration
• Tools for providers to improve the patient experience
• Technologies to make healthcare more accessible for patients, e.g., telemedicine, virtual visits
• Wellness/lifestyle aids (not just "medical", e.g., diet, exercise, recreation)
• “Find a doctor”
• Search for alternatives to provide services (e.g., price comparisons for services not covered by insurance)
• Patient satisfaction surveys
• Bedside communication with family & friends (e.g., Skype video chat, web access)
• Notification/invitation to events (free screenings, symposiums, etc.)

EHR-Dependent (some may also be provided by Health Information Exchanges)

• Patient access to EHR information (e.g., download)
• Personal Health Record (PHR) – tethered; or untethered PHR with data feeds from EHR (to greatly increase usability)
• Patient Portal
• Patient annotations/amendments to their health information
• Patient provision of information to providers (e.g., home device measurements)
• Providers pushing information to patients via patient preference
• Reminder “app” for taking meds, vaccinations, physical exam, etc.
• Other apps or notifications that help patients follow through with what was prescribed/planned
• Tools for patients to act upon their data (trackers, analytics, access to knowledge)

So patients can accomplish quite a bit without EHRs. But you have questions about your lab or imaging tests and their significance, or your many medications, it sure would help to have the actual data and not rely on memory. I doubt that you’d get full benefit from your med list unless you also knew about your problems/conditions and diagnostic results. I, for one, wouldn’t want to take subsets of my data and redundantly enter it into a dozen separate websites.

If I’m a patient who wants a comprehensive and integrated view of my data, how might I get that? More on that next time…

Do Patients Need and Want Data, or Convenience Features?

So it seems that most patients were not “engaged” to, and certainly not “married on” independent PHRs such as Google. Many people including myself have learned more from failures than successes. Sometimes it helps to learn not just from my own failures but from the failures of others. So while the recent announcement of Google Health demise was no surprise, it offers an opportunity to learn. What do patients want? What do they need? Are needs and wants the same?

Mr HISTalk wrote about what Google Health should have done, and asked what actual users (not only HIT pundits) think. Missy Krasner, a founder of Google Health, echoes some of the same observations about people wanting convenience functionality, not a medical archive. She also asks the same question (“to tether or not to tether”) and comments on PHRs not being “social enough” – see my posts about Being Engaged to Multiple EHRs and Social Healthcare and Social HIT).

So, answering Mr. HISTalk’s call, here’s my experience. I was/am a user of both Google Health and Microsoft HealthVault, hoping that one or both would get over the hump of updating my record with providers’ data so I wouldn’t have to enter it myself. Technically, both of them were partially over that hump since they could import medications from my Pharmacy Benefits Manager (Medco), and Lab Results from my main lab provider (Quest), except that I had to get a physician authorization for the labs (why this barrier?), which was an example of the authentication hassle that Missy mentioned. Microsoft was more proactive than Google in allowing HealthVault PHR updated with discrete data extracted from a clinical summary (e.g., CCD) sent by an EHR via SMTP (email) protocol, which I’ve done successfully. While Google was nominally a member of Direct Project, Microsoft was much more involved and visible. Will HealthVault actually be updated by many EHRs, and even so will it still meet Google’s fate? I won’t speculate on that, except to say that Microsoft made it farther over the hump than Google did.

You Don’t Want Only Data, but You DO Need Data!

Nearly everyone intones that a PHR is not useful if it’s just a passive data “filing cabinet.” They say Google Health just didn’t “DO” enough to capture the minds and time of patients, although both HealthVault and Google Health had “ecosystems” of applications that would work with them. A few years ago, I thought “patient engagement” largely meant PHR (including their ecosystems) + patient portals. But I now realize that patient engagement goes way beyond PHR – I’ve got a large and growing list of what it encompasses. Still, just because functionality and convenience are what “sell,” that does not mean that data is unimportant! A physician or hospital won’t want to buy an EHR just for a raw database if the EHR lacks functionality and usability. But an EHR without a solid data foundation probably won’t be very functional or usable either!

Not all patient engagement is data-dependent. For example, I could schedule an appointment without having any of my electronic health information. In my next blog post, I’ll discuss which patient engagement functions clearly need EHR data, which ones don’t, and which ones are in a gray area.

Happy Independence Day!

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!