Aaron Berdofe, MHI – Health Informatics

The most underutilized resource in all of healthcare is the patient.

For those unfamiliar, e-Patient Dave (Dave deBronkart) is a fairly well known blogger and activist who uses his personal experience to advance the proliferation of healthcare data into the hands of patients.  No, this isn’t meaning through Patient Portals or PHRs.  The idea is for every patient to be able to have access to the raw data that comes from EHRs and other systems (x-ray images, lab results, all things under the discreet data umbrella) and be able to plug that in to applications.  One of the examples Dave uses is plugging in his MRI scans into Google Body Browser so instead of generalized resources for health, we could have individualized resources based on our own medical data.  Great ideas, right? But how do we make that happen when EHRs are barely beginning to be able to communicate with each other?

The idea behind the HITECH Act, which is artificially boosting EHR sales numbers at current, is to create a standardized network of medical information sourced from EHR data.  Why the government didn’t just specify a list of discreet data elements and provide a standard protocol for submitting them is beyond me.  Instead, they took on the complicated task of trying to define what an EHR (previously known as the more aptly named EMR) is and how people should “Meaningfully” use them.  Clearly, their focus isn’t on the patient as I demonstrated in my Meaningful Use Word Cloud post.  So now we have healthcare organizations clawing after a few government dollars by implementing electronic systems over broken processes while the patient continues to sit on the sidelines.  It’s not surprising that studies are showing that EHRs don’t actually improve health outcomes or patient safety.  If you think that last statement is incorrect, read my post on motivations behind EHR purchases.

Right now, if a patient is getting assistance from a healthcare organization utilizing all the latest technologies, the access they have to their own data is limited to what can be found in a Patient Portal or for the advanced patient a PHR.  From an Information Systems perspective, these portals and PHRs are dead ends because nothing connects to them and takes data out that would allow the patient to collaborate with other patients like them.  Facebook isn’t popular because you can post things on your own wall for you to keep track of; it’s because you can share.  Even if these portals were open and accessible, let’s keep in mind that not all the data is going to the portal anyway.  MEDITECH customers will be familiar with the fact that not all lab results even come back to their providers’ workloads so they certainly couldn’t expect the missing results to flow to a portal.  Additionally in the MEDITECH world, the actual images for the X-Rays, MRIs and other scans don’t actually flow to the ambulatory side of the system.  The electronic patient chart that is being required to be available to the patient doesn’t include the images either.

MEDITECH and all the rest of the EHR creators out there still live in a mysterious world where they think holding on to information is what gives them power (and money).  I think it may be a generational thing.  Information is worthless if it doesn’t go anywhere and having information doesn’t do you any good if you can’t use it.  The age of the internet has brought the price of information nearly down to zero and companies like MEDITECH are still trying to figure out how to monetize that information instead of giving it away for free and monetizing what to do with that information.  They don’t see any incentive in helping the information flow out of their systems.

And what incentive is there?  Many physicians have flat-out stated that they don’t want their patients to have data because that would unleash a whole new breed of hypochondriacs.  This is partly true.  Patients with symptoms or perceived symptoms flock to websites like WebMD to self-diagnose and we all know how that works out…

Sites like Web MD make their money off of ad revenue.  The more pages they can produce with “content” the more ads they can place on their site.  This leads to a lot of convoluted medical information that generally scares the hell out of those prone to worrying about their health.  However, let’s keep in mind that whether or not a patient has or does not have their existing health information in their hands won’t change the fact that some people will still Google their symptoms.

The patient groups that would benefit the most from having their own actionable information are those with chronic diseases.  Modern medical science hasn’t cured all that ails us.  Each chronic disease can be managed to a different degree of effectiveness, but by definition cannot be cured.  Patients with chronic disease have found that working one-on-one with their physician only gets them so far.  My father, for example has Type I Diabetes that developed later in his life than is common.  He has met with countless physicians who really don’t know how to help him properly manage his blood glucose levels even though they are “experts”.  What has helped him the most is comparing his data with other patients in a similar situation.  He writes down all of his data from his doctors and that he gathers himself meticulously and brings it to the group.  I should also mention that this group found each other.  They weren’t brought together by a healthcare organization or an independent physician.

There are groups like this for varying chronic disease all over the place. e-Patient Dave talks about finding his on-line.  These groups need easily accessible data so they can share and work beyond what the medical community is able to provide.  To not make this sound like too altruistic of a venture, in dehumanizing marketing terms this is a huge “Cash Cow” that hasn’t been tapped yet.  For companies looking for an incentive to share data freely, this is it.  Start focusing on how to provide the mechanisms for free data interchange and if you don’t want to venture into the market of chronic disease management, create the environment for others to do so.  It worked out pretty well for Apple and they didn’t have a government stimulus package artificially inflating their sales numbers.

Many people in the Healthcare IT industry hate when people compare it to other technology industries.  Healthcare is unique and special they say.  However, the major difference between companies like Facebook, Google and Apple and Healthcare IT companies like MEDITECH, Epic and Cerner is that the former companies are focused on connecting people with information and other people. The latter companies are focused on collecting information for insurance companies and calling it proprietary.  That is unique and special, but that doesn’t help the patient.

Some healthcare organizations are already recognizing this revenue stream and creating streamlined care centers for specific chronic diseases.  This is helping, but it still limits the patient’s care to the one-on-one interaction between the patient and the medical community.  Physicians complain sometimes about the patient’s lack of motivation to change or follow their instructions.  Give the patient their data and show them to a group of people like themselves.  This is the best way to engage the patient in their health outside of the office.  The problem is that an EHR doesn’t really want the patient to have the data right now.