Where is your personal health record?

As the US healthcare industry continues its journey to digital / electronic health records that can be easily exchanged as patients move between care settings, practical questions abound:

• Who owns your electronic health records?
• Where are your health records?
• How can they be consolidated?
• Where should they be stored?
• Who should have access?
• How can they be shared?

Legally (HIPAA regulation) – each individual ‘owns’ their personal health data and records, but very few of us have actual ‘control’ over them – at least from a storage, curation and management standpoint. An individual’s ‘longitudinal record’ – which is a comprehensive collection of well-care records (annual physicals and labs, ob-gyn visits, etc.), and episodic care records (diagnosis and treatment for illness, injury, etc.) – is not typically in one place – electronically or otherwise.

There are attempts at this – state or private health information exchanges (HIEs) were established as part of the HITECH components of the American Recovery and Reinvestment Act of 2009.The idea is to have a regional repository for all electronic medical records (EMRs) regardless of where the care was provided. Then a patient’s EMR can be accessed by any clinical entity on an as needed basis to inform past history when that person ‘presents’ for care. A good idea, but a challenging business model – who pays for it? Who ensures that all your care providers are submitting your data? And without a national patient identifier – how to reconcile inevitable name mix-ups?

There is a new ONC / CMS campaign for health insurers to be the new ‘HIE’ – to maintain EMR’s for their plan members. Since they likely participate in each clinical episode from a payment standpoint (wellcare or otherwise), they are positioned to collect the clinical data along with the claims data in a single repository. This may become law, for better or worse, as part of a current set of rules in review under the 21^stCentury Cures Act.

A third push is for the patient/person to collect, maintain and curate their own EMR using a cloud service and application (or webservice – portal). These are known as a PHRs, or personal health record apps and systems. For many reasons (privacy, control and accuracy / completeness) – it makes sense – especially for tech savvy ‘digital natives’. And showing up in a clinical setting with all your health information accessible from your iPhone is the type of immediacy and control digital natives expect.

The personal health record (PHR) model is a grassroots approach, and needs a boost from a major cloud services player – Google and Apple being the most likely candidates. There needs to be some critical mass / pump priming to get these apps adopted and the data flowing from clinical repositories into PHRs at population scale. Then the patient control and resulting consumerization of healthcare can help drive more value from clinical service providers.

In the absence of a Google/Apple initiative, it’s possible for medical associations representing chronic conditions or cancers to build critical mass among their patients. If the American Cancer Society or the American Diabetes Association offered an app that included a PHR function, it’s possible they could build a base of users that would not only control their health records as they moved through their care plans and clinical settings, but they could also provide population health data for research and candidates for clinical trials – perhaps as easily as an ‘opt-in’ offer.

One way or another – the push for more data to be accessible to patients and their care-givers programmatically will continue, and the demand for clinical information exchange technologies and services that are interoperable and cost efficient will expand rapidly as well.

At DataMotion, we are huge fans of patient centered control. Working on a PHR strategy? Talk to us – we’re happy to share our expertise!