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Proposal for an HL7 Patient Workgroup

 

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

Name

Email

Phone

Virginia Lorenzi

vlorenzi@nyp.org

1-516-316-2560

 

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) :

 

        Full name: Patient Empowerment Workgroup [1] [2] [3] [4] [5]

        Abbreviation: PE

 

Keywords (not more than 3):   _ patient engagement innovation

 

Proposed parent steering division :_Administrative Steering Division_

 

Proposed mission/charter/area of focus :_

        Ensure that (appropriate) impacts on patients (positive and negative) are a consideration of the standards development process and are appropriately documented in as part of all relevant HL7 standards.

        Provide an entry-point and give support to patients, caregivers and their advocates with respect to both influencing and leveraging HL7 standards.

        Provide patient centric guidelines for standards developers and implementers

        Assist in the standards development process by providing patient subject matter expertise

        Define, assist and/or coordinate standards and implementation guides related to interoperability with patient-facing systems.  These are some example use cases:

        Patient facing EHR and Payer Query APIs, patient corrections, patient consents, patient generated data (including health concerns, device data, notes, questionnaire responses), patient initiated scheduling requests.

        Provide the patient voice to the interoperability security and privacy conversation.

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):

Name

Email

Phone

Debi Willis

Debi@MyPatientLink.com

+1-405-446-4799

Dave deBronkart [6]

dave@epatientdave.com

+1-603-459-5119

Virginia Lorenzi

vlorenzi@nyp.org

+1-516-316-2560

Abdul-Malik Shakir

AbdulMalik@ShakirConsulting.com

+1-626-644-4491

 

 

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

Name

Email

Phone

Ryan Howells

Ryan.howells@leavittpartners.com

+1-770-630-6146

John Moehrke

JohnMoehrke@gmail.com

+1 920-564-2067

Dave Hill

dwhill@mitre.org

+1-781-271-8022

Mikael Rinnetmäki

mikael@sensotrend.com

+358 50 3855511

Rachel Richesson

rachel.richesson@dm.duke.edu

+1-919-681-0825

Kelly Watson

kelly@tidepool.org

+1 202 421 3200

Abigail Watson

abigail@symptomatic.io

+1-347-302-9345

Bart Carlson

bart.carlson@azuba.com

+1-630-416-4051

Ricky Sahu

ricky@1up.health

+1-347-422-7248

Lisa Nelson

lnelson@max.md

+1-401-219-1165

Nancy Lush

nancy.lush@lgisoftware.com

+1-401-965-9347

 

 


[1] As of 6/18 this (Pt Empowermt) is my favorite - it's simple, without adding any modifiers to "patient"

[2] And as of 9/18, in the middle of Atlanta WGM, I'd favor Patient Perspectives. But I'm not stiff about it. For all I know it should be Patient Advisory Council, not unlike the Patient Advisory Panel at BMJ ... which truly does advise the editors.

[3] Here's the home page of the BMJ's overall partnership program https://www.bmj.com/campaign/patient-partnership and within that, here's the current list of advisory panel members (FWIW) https://www.bmj.com/about-bmj/advisory-panels/patient-panel-members

[4] The final version will strip all comments - you might want to post the links on Zulip.  I'm not a fan of "Patient Perspectives" because that sounds entirely advisory and passive.  This group will be more.

[5] Done!

[6] For the record, today Sept 18 I became a voting member of HL7. :-)   (Grahame made me the second voting member of his company)