Guide to Health Records Access highlights Patients Know Best

The charity Patient Information Forum has published a great report teaching clinicians the principles of giving patients access to their medical records. Page 16 summarises why Patients Know Best (PKB) is better than all current alternatives:

The diagram shows 4 levels on the “road to full personal health records”. Only PKB reaches level 4, as demonstrated by sites like Great Ormond Street Hospital (case study) and St Mark’s Hospital (case study). Level 3 is also only reached by PKB, and is how most of our customers begin.

I want to explain why the other solutions do not reach above level 2B. The next highest exemplar site was South London and Maudsley NHS Foundation Trust with its integration with Microsoft HealthVault to make a patient portal. HealthVault integrations always end up delivering limited benefits, despite high upfront investments. The reason is that HealthVault itself is just a storage environment. It does not include any immediately useful tools for the patient or clinician. So the IT department of the institution has to build these tools from scratch to deliver productivity benefits to staff and patients. These investments often start at $1 million, and by that point, the institution feels it must put all its branding and tight integration on the portal. But as soon as it does so, no other institution‘s staff will agree to use the portal. So the patient does not get the safety of integrated care, and the institution that invested in HealthVault does not get the productivity benefits of collaboration across multiple clinical teams.

By contrast, clinicians can become productive within 1 hour using PKB, inviting all their patients to work with them online, and inviting clinicians from any other institution to co-operate. The model works, and there is no upfront investment, just an annual subscription fee based on usage.

It is worth noting that the much lauded Kaiser Permanente (KP) only reaches level 1B. In other words, KP does not have a personal health record, it has a highly limited institutional record, designed specifically to lock the patient to only receiving care at KP, and blocking the patient’s ability to transfer their records when their job or health insurance plan changes. Policy makers should be aware of this and push for true patient-controlled records as the only solution that suits citizens’ needs.


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