HIEs and Patient Engagement – Why and Why Now?

The following is a guest post by Jeff Donnell, President of NoMoreClipboard.
Jeff Donnell - NoMoreClipboard PHR
Health information exchanges have become quite adept at moving medical data from provider to provider on behalf of patients, but making that data available to those same patients has rarely been attempted – until recently.

Not including patients at the HIE exchange table is understandable, but ironic. Understandable for reasons ranging from policy challenges to a lack of standards to technical limitations. Ironic because HIEs are ideally positioned to aggregate data from multiple providers – leveraging the interfaces already in place with provider applications – and deliver that data to consumers, overcoming several of the major barriers to patient adoption and use of tools like PHRs and patient portals.

HIEs have recently grown interested in supporting electronic patient engagement, in large part based on provider inquiries regarding meaningful use stage two requirements. Many providers are looking for affordable alternatives to the tethered patient portals being offered by their EHR vendors, and they want to provide their patients with a solution that can be used across the care continuum. Increasingly, providers recognize that a patient who visits five different clinicians is not about to create five different patient portal accounts. Savvy providers realize that the HIE is well equipped to provide portable, interoperable solutions.

For HIEs interested in long-term sustainability, patient engagement makes perfect sense. The HIE can leverage its existing interfaces and aggregated data – making existing medical information available to patients from a single pipe, in a standardized format. The HIE can act as a conduit between consumers and clinicians – adding value for all parties. Providers can transmit data to patients, and recent CMS guidance indicates that all providers who contribute data to a shared portal (like that provided by an HIE) can count patients who use that portal toward their 5% patient participation requirement. Patients avoid having to collect data from every provider they see, and can populate a PHR or HIE portal account with existing electronic data. Everybody wins.

The value is evident, but what about those challenges? In the state of Indiana, we received an ONC Challenge Grant to figure out how to get HIE data in the hands of consumers with a PHR. We are fortunate to reside in a state with five well-established HIEs and a provider community eager to innovate, and we have spent the last two years working on those challenges (giving us a real appreciation for why the ONC affixed the challenge label to this grant program). We have addressed issues ranging from patient ID/Auth/Match to minor consent to provider skepticism to amended data use agreements. We have overcome any number of obstacles to get data flowing, and we are seeing increased levels of engagement and enhanced clinical outcomes.

We have learned any number of lessons to help other HIEs, state agencies and healthcare providers avoid pitfalls and make accelerated progress. We are eager to share what we have learned. Perhaps the most important lesson is to get started now – as crafting and implementing a patient engagement strategy takes time. As nobody appears to be manufacturing more time these days, HIEs and other organizations that envision sharing data with patients even a year or two down the road would be well advised to begin working in earnest, with an eye on making incremental progress.

Jeff Donnell is president of NoMoreClipboard, a web-based, Personal Health Record (PHR) management system designed to consolidate medical information in one convenient and secure location for easy retrieval and updates. NMC enables consumers to share personal or family member medical information with medical professionals electronically, reducing the need for repetitive medical paperwork.  Jeff and the company are committed to developing PHR applications that are consumer-friendly, interactive, secure, mobile and interoperable.  For more information, follow us on Twitter @NoMoreClipboard or visit www.NoMoreClipboard.com.

About the author

John Lynn

John Lynn is the Founder of HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

2 Comments

  • Thanks for the overview.

    Australia and France are two countries where the start of HIE is a top down national program to provide a personally controlled EHR as the first objective, with health care professional access as a fully patient controlled secondary objective. Australia is starting with one national IHE based affinity domain, rather than using the regional and Connect based sharing model.

    Time will tell if this approach actually works for anyone! However from an exploration perspective issues such as minor access, access for parents, carers and so on have been developed and operationalised in a HIE framework. For those looking to see what Australia is doing search for Personally Controlled EHR.

    Peter MacIsaac, Health Informatician.

  • Health Information Exchanges are an interesting concept that has no apparent business model. In reality providers often prefer to NOT have patient data available to other providers (AKA ‘competitors). And providers sure don’t want to pay for the opportunity to lose control of their client’s (AKA Patient’s) data. This is why past efforts to ‘share patient data’ (i.e. CHIN, RHIO, etc.) died when the grant funding dried up.

    Similarly providers tend to want to keep their patients from heading to other providers so giving them a non-tethered PHR/service often runs contrary to their economics. Sadly consumers tend to be disengaged with their health/care until they are sick and then it’s often too late to ‘collect/control’ their data.

    Until consumers take a more active role (perhaps driven by rising patient contribution to costs / HDHP/HSA) the demand for HIEs and transportable PHRs appears nominal. It’s fine to pretend otherwise but that appears Pollyannaish to typical market participants.

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