Who should control cradle to grave patient health records?

Health IT is evolving quickly, and the concept of a cradle-to-grave patient health record, aggregated from all the different places where pieces of one’s health story are found, is no longer such science-fiction.

The emergence of interoperable networks is beginning to mature, and is a central focus for health IT in 2012. Whether that involves traditional Health Information Exchange (HIE) hubs (an institution-centered play), or a more direct point-to-point method, or an “extend the platform” approach made possible as a result of web-based EHRs (an ambulatory-centered play), the result is that knitting together a patient’s story becomes possible.

It also means that the resulting Big Data becomes staggeringly powerful. Certainly, the data will exist in the cloud (once the cloud can be made sufficiently secure to meet HIPAA Security standards). The large enterprise-based software of the past, dominant among hospitals and academic medical centers, will simply become large nodes for this cloud-based Big Data, supplemented by web-based EHRs and other participants in the health data space.

Who is to manage it? Certainly, a policy framework needs to exist to ensure that patient privacy is maintained – not just security (ensuring that the pipes don’t leak, and that data is safe where it is housed), but also privacy (ensuring that only authorized people can see someone’s records). Who should control such access? Clearly, it needs to be the patient.

Patient-centered control of identifiable Big Data

For individually-identifiable health data – a patient’s own health record, aggregated from across the entire landscape – clearly, the person managing viewing permissions needs to be the patient directly. Even when sharing data between different care providers (different physicians upon referral, or with the hospital, or any other such combinations), the patient must give permission. This is the case currently, with a paper-based environment.

Sometimes, specific permission needs to be granted (such as an office pulling data from some other place, like a consultant or a hospital, where a patient-signed release form is sent in order to pull data), and in other scenarios (such as sending information to a recipient consultant, for the purpose of medical care) the general permission for treatment covers it. When this kind of data flow, which assumes that data is separate and fragmented and pieces of information need to be sent back and forth, evolves into a global cloud, where all the data resides seamlessly, the permission structure gets more complicated.

The “missing piece” in this might be a patient-oriented PHR, which is connected not only to the treating physician’s EHR, but to the envisioned global cloud more generally. The PHR, when it is connected, can be the center of permission-granting to members of the healthcare team. This is currently not the way PHRs have been designed, but it may represent a strategic vision for the role that PHRs can play – the center of the hub for cradle-to-grave health records.

Consumer-derived data

Outside the realm of HIPAA-governed health data, there is a wealth of consumer-created health data. The sheer mass of this data, in fact, dwarfs what is contained in doctor’s EHRs, in hospitals and in labs. These kinds of data range from self-reported inputs into social media (Facebook apps where people can track their travels, their exercise, their eating and diet), to input into specific web sites (all the health-condition sites where “patients like me” can share their experience with each other, and obtain learning resources). It also includes data created by medical devices – like Internet-enabled blood glucose monitors, where the readings can be uploaded and stored in the cloud.

This kind of consumer-derived data can also be linked together, and the linked PHR is the logical place for aggregation of all this information. The patient, in this setting, determines what to connect and link, and what to share with one’s treating clinicians.

Consumer-created data, when viewed from a PHR, remains patient data outside of HIPAA. When that data is shared with a clinical provider, then the shared data becomes PHI and is governed by HIPAA privacy – it cannot be shared with anyone else without the patient’s permission.

The view looking forward

The concept of a virtual cradle-to-grave medical record for each individual is something that can be seen from where we are today. It will take significant maturation of the health IT interoperability field, and will move toward a secure cloud that taps into hospital enterprise systems, academic institution systems, clinical laboratory and pharmacy systems, community doctors systems, and web-based EHRs. Managing the permission-granting of this data (the personally-identifiable data governed by HIPAA) presents its challenges, and may end up being the future vision for PHRs. We have a ways to go before we’re there.

Further, a central hub around a patient’s PHR may be the place where outside consumer-created health data is centralized. That way, sharing what is appropriate with treating health care professionals can be managed and governed by patient-based permission. The otherwise confusing interplay between HIPAA-governed data and consumer-created data is likely to be best sorted out with this kind of approach.