Last month, we updated our readers on the latest US regulations regarding Stage 2 of Meaningful Use, the effort designed to encourage the “meaningful” adoption of Electronic Medical Record systems throughout the US. Just this past week, the Health IT Policy Committee, which advises the Department of Health and Human Services on HIT issues, released a Request for Comments document, soliciting feedback for the final stage of the program, set to take effect in 2016.
In reading their RFC, we were struck by the following phrase:
While the committee appreciates and recognizes today’s challenges in setting up data exchanges, it is the committee’s recommendation that stage 3 is the time to begin to transition from a setting-specific focus to a collaborative, patient-and family-centric approach.
We share the committee’s point of view, as a matter of philosophy. At Patients Know Best, we have long believed that patient digital records cannot be architected around any particular setting or institution. The institution-centric model works when the software is designed to document care, i.e., the EMR industry, but begins to break down when it is applied to the larger problem of coordinating care.
That said, some of the Stage 3 ideas are quite promising from a patient-centered perspective and we believe they speak to the insight of Health IT Policy committee in recognizing the root problems in HIT:
1. Provide patients with the ability to request an amendment to their record online (e.g., offer corrections, additions, or updates to the record) through a patient portal in an obvious manner.
This is an important point because medical records may contain errors. One of the (many) reasons patients often give up on using patient portals is that they have no way to correct the errors inside. This begins to address the problem and identifies one of the core aspects of a dynamic PHR. Patients happily fix clinicians’ errors free of charge, and we teach our clinicians to say thank you rather than to fear the corrections.
2. They propose expanding on the following Stage 2 Objective:
Provide patients the ability to view online, download, and transmit their health information within 4 business days of the information being available to the EP.
Here, they are open to scaling this requirement to apply to a larger percentage of patients (for each provider) from the Stage 2 thresholds and indicate they are looking to the Automated Blue Button pilots for further guidance on transmission. We will discuss the Blue Button project in a separate blog post, but one of the values of our PHR is that the vast majority of patients at a site sign up and benefit from PKB.
3. Provide 10% of patients with the ability to submit patient-generated health information to improve performance on high priority health conditions, and/or to improve patient engagement in care (e.g. patient experience, pre-visit information, patient created health goals, shared decision making, advance directives, etc.). This could be accomplished through semi-structured questionnaires, and EPs and EHs would choose information that is most relevant for their patients and/or related to high priority health conditions they elect to focus on.
Patients Know Best allows institutions to easily create such semi-structured questionnaires. They are very useful both for collecting important clinical data between appointments on a regular basis, as well as gathering information ahead of a visit so that both the clinician and the patient are fully informed and can make better use of their time together.
There are a number of other proposals (including increasing the threshold for secure electronic messaging) worth discussing as they evolve over time into the final rules. To conclude, however, we’d like to excerpt one of the committee’s notes:
How might we advance the concept of an electronic shared care planning and collaboration tool that crosses care settings and providers, allows for and encourages team based care, and includes the patient and their nonprofessional caregivers?
This is a wonderful question with an answer we have long been advancing–put the patient in control of the data. It’s difficult to legislate EMR and institution interoperability. We’ve witnessed this uphill battle firsthand in the UK. That said, the challenge this committee has identified is the fundamental challenge of patient data sharing across care settings, providers, non-professional carers and family.
The simplest and most effective way to enable this sharing (from a practical and legal perspective) is to put the patient in control of the data. So we’re heartened to see the thinking around Stage 3 acknowledge the importance of a patient-centric approach, even if it does not advocate bona fide patient control.
will the scheme be free to users? if people are holding and importantly owning their own records would they be able to make a decision sell them to researchers ?