Thursday, January 2, 2020

2019 wrap

I am not impressed by 2019. Not personally, not for the healthcare industry, not for my country, and not for our world. This is depressing, but also gives me many things to work on. It is working on fixing problems that gives a Systems Designer something to look forward to in the morning.


On my blog, I only posted 28 articles, which is average more than two a month. But realistically I had a few months where nothing was posted, and other months where a set of four posts happened.

  • Segmentation and Security Labeling: 1, 23, and 4
  • Blockchain: 1
  • Provenance: 1, 2, and 3
  • HIE on FHIR: 1, 2, 3, 4, 5, 6, 7, and 8
  • IHE: 1, 2, 3, 4, and 5
  • Patient Empowerment: 1, 2, and 3
  • Speaking Engagements: 1, and 2


My engagements with standards have been the most productive part of my work life. It is hard to come up with describable milestones, but I know that I have succeeded at many milestones.
  • The IHE profiles from ITI are all now aligned on FHIR R4, and all have FHIR conformance resources published. This is not all me, in many cases I was just the one pushing the authors 
  • I am now part of a team funded by the cooperative agreement between ONC and IHE-USA to position IHE as a major organization for standardization of FHIR based Profiles (aka Implementation Guides)
    • Catalog IHE Profiles that utilize the FHIR standard to enable cross community health information exchange
    • Identify and prioritize new profiling opportunities to leverage the FHIR standard.
    • Accelerate the development of robust, real world testing processes and adoption of the updated FHIR-focused IHE profile and HL7 implementation guides 
    • Actively engage with HL7 and IHE International on lessons learned through profiling improvements and real-world testing
  • IHE use of the HL7 Implementation Guide publication system is coming along. It is taking longer than anyone wants, but we keep coming up with instances where the tooling is (a) hard to use, (b) unstable, and (c) missing important features. In all cases we are working with HL7 leadership together to make this tooling better for everyone.  


The big win for the year was a 60 pound weight loss (4.25 stone) on a Keto diet. The bad news is the last three months have been flat. I wish that was my plan, but I really want to loose another 50-60 pounds. Injury to legs and feet have kept me from exercising.  I feel a bit better, and do enjoy doing things that last year would have exhausted me. But not good enough, yet...


  1. Hi, I see that your blog has some posts about privacy and consent. I am wondering how to go about requesting to opt out of the various exchanges that seem to have popped up (Carequality, DirectTrust, Surescripts, Commonwell, the Sequoia Project along with ehrs that function like HIEs)? I also want to ask what these exchanges allow our providers to exchange--does it allow immediate access to names of providers a patient has seen in the past, past diagnoses and so on, or are the majority for referral purposes? Thank you. I wish there was a way to communicate by phone. I have a lot of questions. Look forward to your response.

    1. In all of these cases today, you register you consent (PERMIT vs DENY) at the healthcare organization that holds your data (custodian). There is no network wide consent management. Thus you need to go to all of the organizations that have treated you, and thus might have data, and register your consent/dissent with them. If you have only been treated at one location, then you only need to go to one location.

      Some regions, like wisconsin where I live and have experience, do have a regional wide consent management system. So you might want to check with your region (usually a state, but sometimes is organization based (e.g. Cerner or Epic or etc))