John Moehrke covered Goal III quite well in his post at the end of March. My thoughts on Goal II appeared the same day, just before the ACO rule was announced, just in case you missed them. And my comments on Goal I appeared the day before that.
Goal IV: Empower Individuals with Health IT to Improve their Health and the Health Care System
Objective A. Engage individuals with health IT
Strategy IV.A.1: Listen to individuals and implement health IT policies and programs to meet their interests.
This one is pretty well written. It's hard to see how they follow up on it, because I'm not usually involved in many of the conversations already taking place.
When including individuals in the health IT policymaking process, the government cannot expect them to come to Washington, D.C. or to seek out rulemaking processes. To truly be representative, ONC will seek to participate in on-going public conversations about health IT. These conversations are already taking place, whether it is in online forums serving specific demographics, community-based faith groups, or chronic disease advocacy groups. ONC will participate in these public dialogues with the aim of learning how health IT policy can support individual empowerment.Strategy IV.A.2: Communicate with individuals openly and spread messages through existing communication networks and dialogue.
Existing communication networks need not be fancy. How about TV? Write something for a magazine that consumers read (maybe even "Consumer Reports"). Go for broad instead of focused... CMS is mostly about Medicare and Medicaid, but many of us receiving healthcare aren't beneficiaries of either. All of us are consumers of healthcare, but I receive the LEAST information about federal healthcare initiatives as a patient.
Objective B. Accelerate individual and caregiver access to their electronic health information in a format they can use and reuse
Strategy IV.B.1: Through Medicare and Medicaid EHR Incentive Programs, encourage providers to give patients access to their health information in an electronic format.
This is working, but is not happening as fast as I would like it. Even so, I'll soon have access to my own records. I don't know where my childrens' pediatrician stands, nor providers serving other family members. I expect they are behind my own health provider. One would hope that the recently announced Care Connectivity Consortium that includes Kaiser, Mayo, Intermountain, Geisinger, and the Group Health Cooperative would show the rest of the country how to succeed. The recent ACO rule is a Medicare incentive program that would move ACOs further ahead, requiring them to develop a plan for exchange inside and outside their communities of care.
Strategy IV.B.2: Through federal agencies that deliver or pay for health care, act as a model for sharing information with individuals and make available tools to do so.
The focus here seems to be on things like blue button, which is little better than a computer FAX. I'd like to see that expand to structured data like the C32. Exchanges between organizations like Kaiser using the NwHIN are also demonstrating success. I still hear a lot about what is going on with Social Security, which I find somewhat disappointing, as that is related to disability benefits, rather than being focused on healthcare. A lot of talk today is about VHA and DoD collaborations on open source, but the jury is still out on whether that will be successful. Certainly this is a model of information sharing that is both long overdue, and also long fraught with challenges.
Strategy IV.B.3: Establish public policies that foster individual and caregiver access to their health information while protecting privacy and security.
The strengthening of HIPAA under HITECH seems to be having an impact. Recent prosecutions of HIPAA violations have resulted in quite a bit of attention that make me feel safer, but probably do little to make the average healthcare consumer feel any better. The provisions in the ACO regulations which foster access to health information have recently come under some fire with regard to how they have ignored the Privacy and Security discussions in the ONC FACAs to date. I'll leave this specific issue to my colleague John Moehrke for any detailed comments.
Objective C. Integrate patient-generated health information and consumer health IT with clinical applications to support patient-centered care
Strategy IV.C.1: Support the development of standards and tools that make EHR technology capable of interacting with consumer health IT and build these requirements for the use of standards and tools into EHR certification.
This is certainly happening in the ONC S and I Framework. If I were grading it, I'd give ONC and A for effort, and a C for results right now. The S and I Framework projects, currently hosted here and previously hosted here have been going on for about 4 months. Building from experiences in The Direct Project, these initiatives are effectively the "New HITSP".
It is still somewhat outside of the framework of SDO governance (even when done with SDOs as in the CDA Consolidation project). Deadlines and planning for these projects is certainly an issue. The first of these projects: The CDA Consolidation project had little more than three months to consolidate guides from IHE, HL7 and HealthStory, focusing on the meaningful use components. It takes many groups more time than that to go through the usual "Storming and Forming" processes, but the S and I framework and HL7 ballot deadlines didn't allow for that. I'm still having trouble understanding what the other projects are doing, and trying to figure out what their goals and deadlines are -- there could be better communication.
There are cases where communication should have occurred using existing networks and technologies but didn't. Wiki's are great for collaborative development, but not really for communication. Mailing lists are much better for the latter, but still don't seem to be used much.
Strategy IV.C.2: Solicit and integrate patient-generated health information into EHRs and quality measurements.
The ACO rule includes a requirement to integrate patient generated survey results into quality measurements. The need for greater patient engagement continues. The first step is to provide patient's access to their health information. The second step is to get patient sourced information into their health records. Given that we haven't yet achieved the first step, it's pretty clear that this one is not ready yet. However, Meaningful Use has set the stage for getting the nation moving towards both of these steps.
Strategy IV.C.3: Encourage the use of consumer health IT to move toward patient-centered care.
Mostly this is being done by including patient generated data into quality measures (e.g., as in the ACO rule). I'd like for there to be more opportunity for patients to use consumer health IT. Current solutions (e.g., Cloud-based PHRs) don't appeal to me. I want my data on hardware I can control and secure, and I want to be able to access it simply. I want the "Quicken" of consumer health IT applications and I want it to be about Health, not payment.
