Stream: implementers
Topic: Connectathons
Brian Postlethwaite (Jul 04 2016 at 00:35):
As we move into the Freeze over the next few weeks, will this Ballot build likely be the Balitmore Coonnectathon Build?
(hasn't come through FMG yet)
Grahame Grieve (Jul 04 2016 at 00:44):
yes, when I publish the ballot, that will be the connectathon version. we'll have a fork for that
Brian Postlethwaite (Jul 04 2016 at 00:47):
Thanks, I'll make that the branch name on GitHub for the dotnet client.
Bob Wildin (Jul 05 2016 at 16:10):
NIH is looking for would-be FHIR implementers (and other BioMed informatics adherents) for an August Hack-a-thon with multiple potential projects. FHIR is featured in one project that intends to extend an open-source Family Health History tool (HL7v3 compliant) by adding some FHIR capabilities (on the sign-up page choose "HL7 compliance and MyFamilyHealthPortrait"). I've included a link to the hackathon website (with link there to sign up), an abstract of our FHIR project, and a more detailed description here. Thanks for checking it out! -- Bob Wildin, Chief of the Genomic Healthcare Branch, National Human Genome Research Institute, NIH.
NLM is promoting a hackathon and FHIR resource use applied to NHGRI’s My Family Health Portrait (Surgeon General’s Family History Tool) is included in the possible projects. Recruiting programmers NOW. See http://www.ncbi.nlm.nih.gov/news/06-14-2016-august-hackathon/ to sign up. Deadline 4pm ET July 11th.
ABSTRACT: My Family Health Portrait (MFHP) is a web-based, open-source, interactive tool that collects family health history (FHH) information from non-professional individual users, stores it in a standards-compliant data file, and does limited-scope disease risk algorithmic assessment for two common health conditions. This hack-a-thon project describes an NHGRI-NLM-NCI collaboration to use a crowd-sourced sprint approach to add HL7 FHIR data transmission to MFHP for at least three purposes: transmit the collected FHH information to an “EHR” server using FHIR resource, download the user’s diagnoses from “EHR” using FHIR and enter as conditions in FHH, and automatically retrieve for the user lay-language disease information from an information service, Medline Plus Connect, for each condition entered in the tool. (more details from Bob Wildin on request).
Background:
Family Health History (FHH) is often described as the “cheapest genetic test” and its collection and interpretation is recommended as standard of care in many healthcare situations. Yet full awareness of its value among the public, and routine adoption among healthcare providers are both unresolved challenges.
MFHP, outlined in the abstract, is also known as the Surgeon General’s Family History Tool; it is the latest in a series of tools in various media arising from the Surgeon General’s Family History Initiative more than 10 years ago. The current version, v. 3.2x, was designed to keep all data on the client side to maximize privacy and uses HTLM5, CSS, and client-side JavaScript as its principal platforms. Users interact with the tool in a browser to enter FHH information on themselves and family members. The tool generates an XML data file (HL7v3 standard), and users store the data file locally, or in the cloud if desired.
NHGRI’s Genomic Healthcare Branch in the Division of Policy, Communications, and Education is the manager of the official (“Surgeon General’s”) version of MFHP. That version gets limited improvements and maintenance through an arrangement with NCI’s CBIIT. Other versions are possible, and, in fact, encouraged. MFHP is open source and under a free BSD-3 use and modify license. It is maintained on https://github.com/CBIIT/FHH and is available for cloning or forking.
HL7 is the international voluntary standards creation organization that is focused on Health IT applications, and particularly for electronic health records data. Although compliant with HL7 v3 Family History specifications, MFHP users’ data has not, to our knowledge, been routinely transferred, in electronic format, into any formal Health IT solution with structured FHH data capabilities, such as an electronic health record (EHR) system. This is the “Holy Grail” of process improvement that would allow harmonization of personally-collected FHH information with that entered by health professionals in their EHRs. It would increase the accuracy of the collected information while reducing the time needed for busy healthcare providers to make it part of their routine practice.
Healthcare provider entered data in EHRs has likewise not been exported in an electronic form consumable by MFHP. Such a capability would allow users to name their conditions using the same precise terminology used by their healthcare providers, and take advantage of “date of onset” information recorded in EHRs to supplement their own date recall for greater accuracy.
MFHP has an existing capability to copy and convert (“pivot”) the data so that it places another entered relative in the primary user position. This is intended so that the first family user can share the information they’ve collected and entered with other family members to save them reentering the information. Using this sharing capability with the proposed functionalities of collecting one’s EHR diagnoses and sending one’s FHH information to the EHR completes the information circuits needed to optimize accuracy, increase collection efficiency, and share among family members and with healthcare providers’ information capable of enhancing healthcare effectiveness.
MedlinePlus Connect (https://www.nlm.nih.gov/medlineplus/connect ) is a web service produced by the National Library of Medicine (NLM). It “helps patients and health care providers access consumer health information at the point of need in a health IT system. Patient portals, patient health record (PHR) systems, and electronic health record (EHR) systems can use MedlinePlus Connect to provide health information for patients, families, and healthcare providers using standard clinical vocabularies for diagnoses (problem codes), medications, and lab tests.” “MedlinePlus Connect accepts requests for information on diagnoses (problem codes), medications, and lab tests, and returns related information from MedlinePlus.” Since the SNOMED diagnosis codes used by MFHP are recognized by the web service, it is possible to link the family condition information entered by users to information about the condition. In the context of MFHP, it would extend the value of the tool by making it a source of personal and family-specific disease-specific health education.
This proposal is about taking advantage of recent advances in healthcare data standards and interoperability methods to enhance the effectiveness of FHH and related opportunities for personal and family health learning.
The latest FHH data standard, HL7’s FHIR FamilyMemberHistory Resource, is an elemental resource nearing maturity and promises to be easier to implement in healthcare settings. The FHIR FamilyMemberHistory-Genetic Profile (http://hl7.org/fhir/2016May/familymemberhistory-genetic.html) extends that resource creating the ability to transmit and analyze pedigrees. The profile uses extensions that support “the capture of mother/father relationships as well as additional observations necessary to enable genetics-based risk analysis for patients.” The richer Profile construct allows description of both health, ethnic, and genetic marker conditions in family members as well as how they are related to the patient.
In use, MFHP asks for the user’s personal and family health conditions, but offers no authoritative information on the conditions entered by the user. This is a missed opportunity for health education.
We propose to use a hack-a-thon approach to evaluate the ease with which MFHP can be improved in several ways, with beneficial impact for MFHP users, developers wishing to improve skills in HL7 FHIR, and MFHPs managers and proponents.
Proposed new capabilities
1. MFHP will have the option of transmitting the collected and saved FHH information via a FHIR resource/profile to a server, such as a Patient Portal for Electronic Health Records. We envision a new UI element (button) and code that, when user activates it, initiates transmission of user-entered FHH data to a server that will do something with it (e.g. store and perhaps compute on it, an EHR for example), while maintaining data privacy per HIPAA regulations. The hackathon will concentrate on the data transmission component and likely not the UI element.
2. MFHP will be able to offer information to users about the clinical conditions they are entering in their FHH record by connecting in real-time to MedlinePlus Connect service using FHIR request and user-friendly information display.
3. An MFHP user will be able to automatically collect from their individual EHR record a list of their own diagnoses, as entered by their healthcare providers, using FHIR requests. The collected information will automatically addend or populate the user’s personal health data in the MFHP displayed data and saved data file, which the user can edit if needed.
Eric Haas (Jul 05 2016 at 19:30):
This looks more like an announcement can you move it over to that stream?
Last updated: Apr 12 2022 at 19:14 UTC
