Health Information Exchange: We’re not there yet

This post was originally a comment by SPM member Jeffrey Harris on our C-ME post from April 3, 2014. Jeffrey has a long history as a clinician, a health IT strategist, and as a patient. We thought his commentary deserved its own post.

Jeffrey Harris photoI had the opportunity to moderate a PCPCC e-Health Public Meeting recently. We interviewed Dr. David Kendrick from the Oklahoma My Health Network. I believe they are a good example of the top 10% of HIE implementations for quality and value added to most stakeholders.
The architecture makes sense as the HIE brings services that eliminate administrative costs among providers, policy experts, payers and even patients.

They are using HealthVault as a PHR which, as you know, allows patients to create their own information-sharing profiles as well as connect to lab hubs, pharmacy hubs etc.

Your comment on a regulated banking model is something I would support. Here is the reason: As a healthcare executive with clinical program skills and HIT innovation patents I would be short sighted unless I add in my 47 years as a person with diabetes and associated co-morbidity.

We were promised increased safety, reduced cost, etc. due to implementation of health information exchanges (HIEs). Instead, our providers (including integrated delivery networks) are taking incentive payments for technology and using data for performance payments, yet not electing to share data with patients through a Single Sign On technology. The HIE in Oklahoma would be a natural architecture as it could push CCDs to HealthVault where patients could then access their global history.

We forget that 5% of the US population accounts for 50% of healthcare expenditures. These are folks like myself, with multiple sub-specialists who belong to different networks of care. My experience has not changed, with the exception of postal costs.

To assemble my documentation for a new physician (in this case a neurosurgeon) I had to access three portals, drive to one imaging service and then cut and paste the sentinel data that patients often forget to report into HealthVault. Then, I extracted data again through cut and paste methodology to deposit as a personal e-mail note in my secure ‘MyHEALTH’ Record at Duke since they will not allow patients to upload information. Yes, patient data entry is extremely important and easily controlled with regard to how it is used (for you lawyer types).

Unless we can get competitive business units (the root of health care fragmentation) to allow their information to flow, we will not see the returns we have been promised.

Here is an index case: I had neurosurgery on my c-spine. My family has a history of malignant hyperthermia. That history is only noted deep within a paper record somewhere in California. Here’s the problem:

  • How many patients remember stuff like this?
  • What if I received Halothane – 50/50 chance of survival?

So, I cut and paste from Healthvault.

The variable that we completely forgot when re-engineering our system is the fact that our society is based on individual rights and will. While this gives rise to incredible innovation it does not guarantee that humans will exchange information without receiving some return on the investment. Even when someone’s life is in the balance.

Yes , it is that dramatic when one looks at one patient at a time.


Posted in: medical records | policy issues | reforming hc





4 Responses to “Health Information Exchange: We’re not there yet”

  1. Brad Tritle says:

    Thank you so much for your thoughtful and informative post. It provides great first-hand examples as to how the system is NOT effectively serving patients, as it could if a few system changes were made. You hit the nail on the head when you imply it is the needed paradigm shift/attitude change to “patients need all their relevant data in one place” that would drive all the other changes. I would love to hear of the HIE successfully sending the CCD to HealthVault. Montana’s HIE has done this with initially payer data to Dossia(an employer-sponsored personal health platform/record), and may have already evolved to provider data per their plan. Thanks again. Would love to talk by phone sometime.

  2. Courtney says:

    Someone recently referred to my company, CareSync, as the “HIE for the patient and his family.” We took it as quite the compliment. Until technology is truly in place for this tier of information exchange, I think patients, especially those of us who see multiple providers in multiple health systems) do have to take some ownership of getting that data – but it is a big pain. That’s the premise behind what we do – we combine excellent technology and services. We collect all of a member’s records from all of their providers, we transcribe important information from each past medical visit which builds a CareSync Health Timeline that is easily filtered and shared with the people who need access to it.

    I broke my hand and ended up having surgery this winter – I saw my PCP yesterday for the first time in nearly a year, and he had NO idea that I’d fallen, had Sx, etc. prior to receiving the faxed print out of my filtered report – I sent him everything linked to the 3 health conditions. I posted a picture on Twitter last night, during the MedX talk –

    I passionately believe in what we’ve built – both in the web, iOS, and Android apps, and the services side of the business. The Health Assistants even book appointments for the members – you just fill out the form with the basic info, and they schedule it for you – so far, in just a couple months of offering it, 98% of the scheduled appointments were completed – people get so overwhelmed so quickly by the healthcare system – CareSync offloads some of the burden that keeps people from experiencing great medical encounters.

    My PCP yesterday? High-fived me on the way out and said he wished 5% of his patients were as organized as I am.

  3. Robert Lewis says:

    I think you bring up a great issue, questioning where health care companies draw the line between care and profit. Our private health care system allows for individual health care networks to operate independently in the same geographic area but those competing institutions don’t share their information with one another–why would they? That’s not the nature of a private business, to share it’s information with its competitors.

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