Healthy Living Who Should Ain A Patient’S Wellness Data, Where Should They Hold Upward Stored, Together With How Should They Hold Upward Exchanged (Part One Of 2)

Influenza A virus subtype H5N1 thought-provoking conversation on LinkedIn (see this link) examines whether the patient information stored inward the national wellness information network (NHIN) will, inside the adjacent 5 years, probable live on "owned" past times major firms such equally Oracle, Google, as well as Microsoft.

While most (though non all) commenters replied NO, the give-and-take covered around really interesting topics nearly information ownership, storage, privacy, as well as exchange. Following are excerpts.
I replied to the original query this way:

I debate that ONLY grouping of people who should live on allowed to OWN a patient's (consumer's) identifiable wellness information is the patient him/herself. The patient may let other people (i.e., "Trusted Partners") to lead hold access to for certain information as well as to shop it securely inward centralized databases behind a firewall and/or inward distributed encrypted information files stored locally. And when it comes to de-identified information for inquiry purposes, I suggest that those information live on available to anyone (e.g., nether regime control).

The best model for information commutation betwixt the Trusted Partners (TPs) as well as betwixt the patient as well as the TPs, imo, is a P2P pub/sub mesh node network resembling telephone networks.

Several others concurred amongst me nearly patient ownership as well as added comments such as:

…interoperability as well as access to longitudinal patient wellness information across physicians as well as fourth dimension is a burden on bandwidth as well as really costly…the ownership of information volition ultimately live on the patient but the help of the regime inward providing a non-for-profit repository where the information sits as well as is maintained is a must. French Republic is a adept event of how this is possible…The best architecture for a national Health Information Exchange volition live on technology agnostic infrastructure, where EHRs are easily aggregated from multiple information sources simultaneously upon asking past times an authorized healthcare organization…All appear to handgrip that "networks of networks" model is a chip cumbersome as well as that patients should ain the data…While I handgrip that the patient is the ultimate possessor of the data, I produce non handgrip that they should live on the information aggregator - which agency that patients should non live on held accountable or responsible for the collection, entry as well as direction of all their wellness information.

Another commenter I suggest this scenario:

Patient information "lives" inward an encrypted "cloud", identified using a Universal Healthcare Identifier equally is beingness developed past times Global Patient Identifier, Inc. In gild to homecoming the information useless to hackers & thieves; fiscal & social safety information is NOT stored amongst it.

EHR standards similar to ASC X12 HIPAA transactions, such that an entity (i.e. Provider) tin asking the Patient information vie a touchstone cyberspace web-part that is populated based on selected parameters such as: all data, information for a specified fourth dimension period, specified type of information (Radiology only, Lab results only) - or a combination of these parameters. In this way - information is available anywhere on Blue Planet it may live on needed.

We'll soundless involve to devise a way for the Patient to grant access. Also, we'll lead hold to think nearly controlling the information which was requested as well as locally populated. Can it hence live on stored locally / should it live on erased? Perhaps this is managed via the TYPE of access the Patient grants to the requesting entity.

To which I replied:

…I suggest that whatsoever database inward a world cloud should solely contain de-identified information from multiple sources for inquiry (aggregate analyses); the cloud could equally good shop back-ups of encrypted information files for each patient amongst the originals residing on each destination user's (clinician's, patient's, organization's) estimator difficult receive (or network server). These information files would contain patient records made upwards of information fed from locally stored sources (e.g., EHRs, PHRs, CPOEs), manual inputs, medical device information streams, as well as hence on. Influenza A virus subtype H5N1 P2P, pub/sub, node network cyber-infrastructure would enable authorized nodes/users to conveniently commutation of information sets from patients' information files; to minimize toll as well as complexity, the files tin live on exchanged via encrypted email attachments. I'll live on offering to a greater extent than details on this new wellness information commutation model over the adjacent brace of weeks. See this link.

Note that patient command is enabled past times decompositing a locally stored information file based on rules reflecting a patient's privacy wishes, hence that solely the portions authorized past times the patient are exchanged. See this link.

Another commenter hence wrote:

Consider the information related to a patient to live on an "object" inward a massive information warehouse. Different information attributes associated amongst this object are (at to the lowest degree today) "owned" past times dissimilar people/organizations. For example, around of the provider information is as well as should live on "owned" past times the provider as well as non available to other providers, payers, or patients. I encounter this equally ane of today's key perceived barriers to physician/practitioner credence of the NHIN model.

Conceptually this pattern is possible, but a challenge remains amongst the "physical owner" of the information warehouse, its database as well as application pattern characteristics, as well as its safety administration. Ultimately, inward whatsoever Information System, someone needs to live on the "master administrator". Furthermore, the patient does lead hold ownership over who may live on authorized to "tag onto" their patient-object (i.e., who lead hold they authorized to supply them care).

One proposition may live on to encrypt the content-data hence that the "master administrator" tin gear upwards the safety for diverse attributes (between provider, patient, payer, government, or other users) without having the might to access the content. This service tin live on designed hence that the patient may designate these roles, but solely for their ain patient-object.

I advise that the HIO [health information organization] supply for physical ownership at a "relatively" local flat (by metropolitan expanse or rural region), using cloud computing principles that are updated to comprise HITECH as well as related concerns. There needs to live on a mutual interface betwixt these HIO's inward gild to orbit the NHIN.

To which I replied:

While a patient ought to "own" all their wellness data, it doesn't hateful that such ownership is the same equally having actual physical possession of them all. After all, each healthcare provider (from an private clinician to hospitals to large wellness scheme such equally Kaiser as well as Geisinger) has physical possession of the information that they collect. It's unreasonable to facial expression that all those information (including images) live on shipped to the patient for local storage as well as to inquire the patient to liberate those information each fourth dimension a provider needs them. Instead, the information should live on stored where it is collected.

There is ane exception, however: the PHR. All PHR information should e'er live on stored amongst (i.e., physically possessed by) the patient (preferably, imo, inward an encrypted information file), fifty-fifty if collecting information through the PHR is done via a kiosk inward a doctor's business office or through a provider's spider web site. Furthermore, all EMR/EHR information (with around possible exceptions, such equally a psychotherapist's notes) should live on sent automatically to the patient's PHR; as well as the PHR should lead hold the agency to help the patient empathise what those clinical information mean.

To bargain amongst the privacy issue, the PHR should possess functionality that enables a patient to position the particular information able to live on shared amongst particular types of providers. In addition, patients' PHRs should give them guidance as well as warnings nearly who should lead hold access to particular information based on their roles as well as responsibilities. In that way, whatsoever information are stored inward a provider's database/warehouse could solely live on shared amongst tertiary parties when explicitly authorized past times the patient.

And delight confirm that I empathise your proposal: Patient information tin live on considered an "object" amongst attribute tags defining those authorized to access information from that object. And yous enjoin the object would live on stored inward a massive information warehouse, but in that place are problems amongst determining who should physically ain the warehouse database live on the "master administrator," equally good equally the failure for the patient to command who is authorized to add together tags to a patient-object. The proposition is to encrypt the content spell let the original admin to gear upwards those ascendance tags inward accord amongst the patient's wishes. Using cloud computing principles to back upwards ownership past times regional centers as well as a mutual interface betwixt them would enable a NHIN.

Assuming my agreement is correct, hence what nearly the next information ownership as well as commutation model: I handgrip that patient information ought to live on managed equally an object. I content that the object ought to live on a information file, preferably an encrypted delimited text file (such equally comma separated value format) to minimize size as well as overhead. There would probable live on multiple information file objects for each patient, which are stored really locally depending on who entered/collected the information (e.g., on a patient's or clinician's computer, smart phone, retentivity stick/card, or on a wellness organization's server, etc.).

For everyday transactions (e.g., when a primary tending physician exchanges patient information amongst the specialists to whom they refer, or when a patient as well as clinician part information betwixt a PHR as well as EHR) a desktop or network-based software plan would automatically decomposite (break apart) the local information file, extract the authorized data, as well as ship that information gear upwards via an encrypted email attachment using PKI to assure the right recipient gets it. The recipient tin hence sentiment those information inward a personalized, template-based study Influenza A virus subtype H5N1 decentralized node-to-node, pub/sub mesh network could produce this exceptionally cost-effectively as well as amongst minimal complexity, inward add-on to increasing safety as well as privacy since the nodes' actions are guided past times a rules base of operations requiring no human intervention.

Continuing amongst my proposed model, the NHIN information warehouse would live on fed past times the same software plan inward the same manner, amongst each NHIN server beingness connected to a node inward the network, as well as amongst email beingness the "common interface." When invoking its subscriber function, the NHIN node(s) would automatically think information files sent to it as well as import those information into its database(s). These files would contain a standardized minimal information gear upwards (MDS) based on the CCD/CCR, whereas the information exchanged betwixt healthcare providers, as well as betwixt patients as well as providers, would include but non live on express to the MDS. When invoking its publisher function, the NHIN node(s) would ship the appropriate information to the appropriate subscriber (provider or researcher) nodes, which may include immunization as well as illness registry data, biosurveillance data, as well as de-identified information flat toll & character research. The NHIN would equally good enable whatsoever authorized clinician to access for certain patient information residing beyond the confines of the regional information centers. By using these unmanned nodes for carrying out the information commutation processes, the issues of safety as well as privacy are increased, equally mentioned above, as well as the problems associated amongst a original administrator are eliminated.

The conversation is continued at this link.

Related posts:

• Who should Own a Patient’s Health Data, Where should they live on Stored, as well as How should they live on Exchanged (Part 2 of 2)
• The force for ‘push’ technology for the NHIN
• Combining Cloud Computing, Client-Server as well as Novel P2P Pub/Sub Mesh Node Network Architectures (Part 1 of 2)
• Combining Cloud Computing, Client-Server as well as Novel P2P Pub/Sub Mesh Node Network Architectures (Part 2 of 2)
• A Novel Way for Everyone inward the Nation to Exchange Health Data Simply, Inexpensively as well as Securely
• Simple, Low-Cost, Secure Health Data Exchange
• Health IT: Comparing Cloud Computing as well as Desktop Applications (Part 1)
• Health IT: Comparing Cloud Computing as well as Desktop Applications (Part 2)
• Health IT: Comparing Cloud Computing as well as Desktop Applications (Part 3)
• Dueling Data Formats
• Knowledge, Standards as well as the Healthcare Crisis: Part 6  
• Introducing our disruptive CP Split technology

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