Proposal for an HL7 Patient Workgroup

Steward of proposal: (person responsible for taking the proposal through the approval process)




Virginia Lorenzi


Have you discussed with CTO/TSC Chair? No X Yes 06/12/2019
If yes, please summarize the outcome of that discussion:Wayne was supportive of the creation of the work group. Have since socialized the proposal various other places. On Sept. 17, the board passed a motion endorsing the formation of the group
Date on which template submitted to parent steering division: __10/7/20_____
Proposed name of new work group (50 character max display name and ten character abbreviation):

Keywords (not more than 3): _ patient engagement innovation
Proposed parent steering division:Administrative Steering Division
Proposed mission/charter/area of focus:_

Explanation of demonstrated need: While the objective of most, if not all, HL7 standards is improved patient care, we have never had an organizational structure whose purpose was to directly represent the viewpoint of patients and their care-givers as part of the standards process. FHIR, in particular, offers the promise of interoperable systems whose primary users are patients and the friends and family who assist in providing their care. Even within other healthcare applications, there's increasingly a demand for patient-sourced data, integrating patients and their supports into the care planning process and closing the loop around the effectiveness of therapy. As well, an increasing number of patients are moving to take advantage of HL7 interfaces to help understand their current health state and to take greater control of their care.
Patients need a voice at the table around the standards because they are the end user of most of the HL7 standards. There is a need for standards guidance around standards for interoperability with patient-facing applications and devices. Also, patients who are interested in leveraging and/or influencing HL7 standards need an entry point that can support and guide them as they work within the HL7 organization.
While a significant portion of this workgroup's work will involve review and advocacy with respect to the work products of other work groups, this work group is expected to co-sponsor or occasionally even sponsor the development of standards artifacts. For example, they will have ownership of certain pages within the core FHIR specification and may produce informative and normative specification related to patient-facing applications. While the group may review and provide patient subject matter expertise on other specifications and provide feedback on patient-facing documentation, the intention is for the group to have open membership and not to act as a governance body. As such, the recommendation is to create the group as a full work group, not a special interest group or user group.

Proposed interim co-chairs (2 required):




Debi Willis


Dave deBronkartFor the record, today Sept 18 I became a voting member of HL7. (smile) (Grahame made me the second voting member of his company)


Virginia Lorenzi


Abdul-Malik Shakir


HL7 Members who have agreed to work group membership (5 required):




Ryan Howells


John Moehrke

+1 920-564-2067

Dave Hill


Mikael Rinnetmäki

+358 50 3855511

Rachel Richesson


Kelly Watson

+1 202 421 3200

Abigail Watson


Bart Carlson


Ricky Sahu


Lisa Nelson


Nancy Lush