The Making of an IHE Profile Part 2

Yesterday, several members of IHE, HITSP and HL7 spent several hours describing the IHE process to people at the PHIN Conference. Then we developed several IHE Profile proposals and selected one that will be passed on to the appropriate IHE Committee for review for the 2010-2011 development cycle (see IHE Patient Care Coordination Accepting Profile Proposals last month).

The first step of our process was to brainstorm ideas. Here are just some of the ideas that we came up with (there were a few more, but I failed to copy all of them down in my exhaustion after 10 days of travel, so I'm working from memory) :

• Case Reporting Workflow
  Reporting Public Health Cases from an EMR or possibly a PHR using existing clinical data, gathering additional case reporting data. This could also be expanded to further support case investigation.
• Cancer Treatment Data Gathering and Summarization
  Gathering cancer treatment data in a Cancer Registry from numerous data sources, and providing (possibly on demand) a summary of cancer treatment.
• Clinical Terminology Services/Vocabulary Exchange
  Supporting the exchange of terminology information for use within clinical decision support, Electronic Medical Record Systems and quality reporting systems.
• Alerting Dissemination
  Disseminating alerts and providing them at the point of care.
• Elligibility Workflow
  Obtaining information about a patient's elligibility to participate in a particular program, making a determination about their elligibility, obtaining consent to participate in a program, and to share information with the program, and enrolling the patient in the program.
• Emergency Department Surveillance
  Gathering data from emergency department visits.
• Forms Exchange
  Exchanging and deploying data collection forms from State public health to local public health.
• Electronic Laboratory Reporting
  Gathering laboratory data for surveillance.
• Electronic Master Patient Indexing for Public Health
  Supporting the use of a single EMPI for public health programs.
• Exchanging Disease Treatment Data with Surveillance Programs (e.g., Immunization and Influenza)
  Connecting different information systems used for public health with each other to see how treatment impacts the spread of disease. This could include passing a summarized data set between registries containing treatment data (e.g., Immunizations) with systems that monitor the spread of disease (e.g., Surveillance).
• Message Validation Services
  Supporting the validation of messages at runtime based on specifications.
• Gathering and Reporting Vital Statistics
  Reporting the details of birth or death to a vital statistics registry.
• Exchange of information about Healthcare Associated Infections
  Reporting Healthcare Associated Infections to public health officials.

Then we reviewed the different ideas and talked about what IHE has to offer already in these areas. In many cases IHE had a profile to meet the needs, possibly more than one. Many of these ideas involved:

1. Managing patient identity, for which the IHE Patient Identity Cross Referencing (PIX) and Patient Demographics Query (PDQ)profiles apply (also available for HL7 Version 3).
2. Gathering information from providers treating a given patient, for which the IHE Cross Enterprise Document Sharing (XDS.b) profile, and the Document Metadata Subscription (DSUB) profiles apply, as do the various content profiles from the IHE Technical Frameworks (e.g., the PCC domain's Emergency Department Encounter Summary (EDES), the Lab domain's Sharing Laboratory Reports (XD-LAB) and Laboratory Testing Workflow (LTW).
3. Exchanging dynamic requests for additional information, for which the IHE Retrieve Form for Data Capture profile applies.

There were several places where there are still gaps in the standards. On the alerting side and in a few other places, the ability to exchange rules that could be used for clinical decision support, or specific guidelines for treatment, or alerts, is still missing some critical standards. Another place where standards are missing or incomplete are document templates or messaging guides for reporting vital statistics information. In all of these cases, IHE members are involved in other standards organizations and are engaged in moving these activities forward.

Next we divided up into three groups, and each group selected one or two of the ideas that appeal to them to develop a brief profile proposal. The proposal needed to include:

1. Statement of the Problem
2. A Key Use case describing the problem
3. Identification of the Systems involved
4. Identification of Standards Available
5. Further Discussion

After developing the proposals, each team was given time to present them and answer questions. I asked the same question of each team, which was for them to somehow quantify the value or impact of that proposal on the existing situation in terms of patients served, workload reduced, et cetera. This is such a useful question that I've proposed adding it to the brief proposal template, and will be quizzing profile proposers for these details.

As a result of this tutorial at PHIN, we produced three different proposals, which are in bold above. The top vote getter is at the top of the list, and we will be moving that forward to the Quality, Research Public Health domain. However, there were no losers here, because the other two are also being persued by the groups who were involved. The Clinical Terminologies proposal will be passed along to IT Infrastructure, and the Cancer treatment data gathering and summarization will be passed along to either PCC or QRPH.

We were thrilled with the results of this effort, and I will be following these proposals as they move forward in the process. In addition, IHE PCC will be reviewing a second round of proposals earlier in 2010. This is in expectation that there will be additional demands for new work in early 2010 coming from various international groups, and to better balance our workload for the coming year.

I hope that we will be able to provide a similar tutorial session at HIMSS in February of this year, and I will also update you on the progress there.