Consumer Internet health products have generally been focused around specific issues – weight tracking tools (e.g.myfitnesspal.com), running and physical activity signup tools (e.g.active.com), or data collection from personal instruments such as pedometers (e.g. fitbit.com). These kinds of products, being targeted toward consumer segments already interested in the particular activity, enjoy high levels of engagement. On the one hand, their enrollment is self-selected, and on the other hand their use tracks in the millions of people each month engaging in their service. A feature common to the successful products in this sector is their ability to allow consumers to share their experiences and successes socially with their friends, or with forums and communities around the product. This would support the argument that consumers are hungry for healthcare service tools, when they are presented in a valuable way.

On the other hand, there is also a growing number of portals pushed out to patients (or employees) from health care providers. Doctors with EHRs have portals (each one has a different one), hospitals have portals, medical societies have portals, health plans have portals, and employers have healthcare portals. In contrast to the consumer Internet space, healthcare portals pushed out to patients by providers have had dramatically lower levels up uptake and engagement. Activity in even the best of these “Personal Health Records” (PHRs) is measured in the thousands, or tens of thousands – not in the millions.

Why the disconnect?
If one only looks at the provider-centric PHR portals, and sees the low level of engagement there, one might be tempted to conclude that “patients are not interested in their healthcare.” But the consumer experience argues the opposite – consumers (patients, which are consumers in their relationship to healthcare providers) clearly are interested in tools that help them manage their health. It just needs to be done differently than the way that PHRs are doing it now.

When consumers own, self-sign up for, and manage their healthcare records themselves, as is the case with consumer Internet products, there is already a level of engagement. When those sites are built to facilitate social sharing of one’s successes, then there is even more engagement. The control of one’s own health data is in one’s own hands, which is what people want.

Now, if a consumer-based “new PHR” product is able to connect with doctors, hospitals, health plans and employers, and act in a tethered fashion to these EHRs (like the EHR-centered PHR portals we have now) – review one’s problem lists, medications, allergies, immunizations (your own and your children’s’), and also be able to use that connection to securely communicate with one’s doctor (e.g. for requesting refills, making appointments, reviewing recent labs and other test results, or asking general questions), then the value of such a product becomes exponentially higher. And the engagement in such a product can really soar.

[Related Article: Health IT is “I will see the doctor now”]

Of course, such a product has not yet been built, but that is the direction where many in the health IT space are moving.

Are physicians afraid of such patient empowerment?
There is an interesting dynamic here. Consumers (patients) want to control their own data, and share their data with each other socially at their discretion. They also want to download (in a protected and private way) their data from their healthcare providers. Ideally, this should all happen in a unified place, so that consumers are not faced with a myriad of logins to keep track of, in order to access siloed pieces of their health data from all the little buckets where it resides.

But when patients (consumers) initiate contact with their doctors, and want to upload data they have collected themselves in order to place it in their doctor’s medical charts (their EHRs), then it can get a little dicey. Why? Because doctors, when they receive information about a patient, become responsible for that data, and might be liable if they fail to note and act upon something important (the needle in the haystack).

Physicians – and this is especially true for primary care physicians – already manage vast amounts of data about their patients. Beyond just information that comes from in-office face-to-face encounters, physicians are also managing medications (refills), phone calls, and stacks of correspondence about patients (usually faxed, though slowly that is being replaced by EHR-to-EHR data transfer). These represent data streams that must be carefully managed.

[Related Article: ONC Looks To Re-imagine Electronic Health Records]

Now add to that burden an additional data stream – directly uploaded data from a patient. If that is in the form of a secure email, with some lists or other documents attached, then it can be processed in the one-at-a-time way that all the other data streams about patients are handled. It is just one more place to go look for patient information. (A side comment about how health care is paid for in the U.S.: It adds burden, therefore overhead, without adding revenue, leading providers to want to minimize this burden)

However, if that patient-originated data upload to a physician’s EHR is a huge data dump – say, all the blood pressures measured over the past month by an automated blood pressure device the patient has at home, or the entire blood glucose log recorded by a glucometer – it can get overwhelming. This highlights that “outside PHR”-to-EHR data transfer needs to rely on very good visualization and summarization tools, so that trends and episodic outlier data points are clearly visible.

This would explain an observation made by individuals who have worked in the Health Information Exchange (HIE) field – products that facilitate institutions or regional HIEs in their attempt to connect EHRs (doctors, hospitals and labs) to each other. The observation is this: outbound data from a doctor through an HIE to a PHR (like Microsoft Health Vault) is fine, but if that triggers an automatic dump of everything in the PHR back to the EHR, there is resistance. The fear is that if there are hidden surprises in the PHR data, and if missed as it is uploaded into the EHR, then there is a liability exposure – the doctor becomes responsible for this data. As a result, many doctor EHR uses won’t engage the PHR because of how data exchange is architected.

How do we resolve this?
We need a way out of this dynamic that gets in the way of the “irresistible force” towards patient-centered health care. Here are some general points to keep in mind, as guides forward:

1. The patient-facing tool (the PHR) needs to be a consumer Internet product, which consumers (patients) can sign up for themselves, encourage their friends to sign up also, and can share data they want to socially with communities
2. Passive EHR-centered portals will not gain traction to any significant degree, as has been the experience to date. The desire to connect needs to come from the patient (consumer) side, and technology must facilitate this
3. When a patient-originated PHR connects to the EHRs of the providers whom the patient engages, it must act in a tethered fashion so that all of the capabilities of the EHR patient portal are mimicked – but (from a patient perspective), you can “take it with you” when you change doctors, health plans, employment, etc.
4. Data can be downloaded automatically or on demand from the EHR to the PHR. (This is consistent with the Download/View/Transmit requirements of Stage 2 Meaningful Use)
5. Data to be uploaded to the doctor’s EHR from the PHR needs to be done in a way that uses very good data-visualization tools, and needs to be put in a queue of review that can be open or closed, based on agreement (or lack of agreement) between the patient and the doctor. Either party can accept or decline specific kinds of data feeds.

Patient-engagement health IT is an exciting new frontier. It will emerge over the next one or two years, and will transform some fundamental dynamics in health care delivery in the U.S. There is an interesting dynamic between the tools and the users of those tools (until the iPad was invented, people didn’t realize they couldn’t live without them) – the same will likely be true in health care. The irresistible tide of consumer empowerment (patient-centered health care) will clearly lead the way in this evolution. These are exciting times.

Robert Rowley is a practicing family physician and healthcare information technology consultant. From its inception through 2012, Dr. Rowley had been Practice Fusion’s Chief Medical Officer, having created the underlying technology in his own practice, and using that as the original foundation of the Practice Fusion web-based EHR. This article was first published on Dr. Rowley’s web site www.robertrowleymd.com.