Health informatics — Sex and gender in electronic health records

The purpose of this document is to: — describe the current challenges with documenting and sharing sex and gender information in electronic health records. — identify the current state of international standards and specifications that include sex and gender. — summarize the findings and identify opportunities to improve clarity and consistency in the use of sex and gender in electronic health records.

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General Information

Status
Published
Publication Date
10-Dec-2023
Current Stage
6060 - International Standard published
Start Date
11-Dec-2023
Completion Date
11-Dec-2023
Ref Project

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Standards Content (Sample)

TECHNICAL ISO/TR
REPORT 9143
First edition
2023-12
Health informatics — Sex and gender
in electronic health records
Reference number
ISO/TR 9143:2023(E)
© ISO 2023

---------------------- Page: 1 ----------------------
ISO/TR 9143:2023(E)
COPYRIGHT PROTECTED DOCUMENT
© ISO 2023
All rights reserved. Unless otherwise specified, or required in the context of its implementation, no part of this publication may
be reproduced or utilized otherwise in any form or by any means, electronic or mechanical, including photocopying, or posting on
the internet or an intranet, without prior written permission. Permission can be requested from either ISO at the address below
or ISO’s member body in the country of the requester.
ISO copyright office
CP 401 • Ch. de Blandonnet 8
CH-1214 Vernier, Geneva
Phone: +41 22 749 01 11
Email: copyright@iso.org
Website: www.iso.org
Published in Switzerland
ii
  © ISO 2023 – All rights reserved

---------------------- Page: 2 ----------------------
ISO/TR 9143:2023(E)
Contents Page
Foreword .iv
Introduction .v
1 Scope . 1
2 Normative references . 1
3 Terms, definitions and abbreviated terms . 1
3.1 Terms and definitions . 1
3.2 Abbreviated terms . 2
4 Background . 3
5 Current state . 3
6 Challenges . 4
6.1 Overview . 4
6.2 Electronic health record-related challenges . 4
6.3 Person-level challenges in EHR . 6
6.4 Cultural and linguistic challenges in EHR . 7
7 Opportunities . 8
7.1 Overview . 8
7.2 Benefits . 8
Annex A (informative) Identities which can be considered as falling under the nonbinary
umbrella .10
Annex B (informative) Identities which can be considered to be gender-diverse .
...

FINAL
TECHNICAL ISO/DTR
DRAFT
REPORT 9143
ISO/TC 215
Health informatics — Sex and gender
Secretariat: ANSI
in electronic health records
Voting begins on:
2023-07-31
Voting terminates on:
2023-09-25
RECIPIENTS OF THIS DRAFT ARE INVITED TO
SUBMIT, WITH THEIR COMMENTS, NOTIFICATION
OF ANY RELEVANT PATENT RIGHTS OF WHICH
THEY ARE AWARE AND TO PROVIDE SUPPOR TING
DOCUMENTATION.
IN ADDITION TO THEIR EVALUATION AS
Reference number
BEING ACCEPTABLE FOR INDUSTRIAL, TECHNO-
ISO/DTR 9143:2023(E)
LOGICAL, COMMERCIAL AND USER PURPOSES,
DRAFT INTERNATIONAL STANDARDS MAY ON
OCCASION HAVE TO BE CONSIDERED IN THE
LIGHT OF THEIR POTENTIAL TO BECOME STAN-
DARDS TO WHICH REFERENCE MAY BE MADE IN
NATIONAL REGULATIONS. © ISO 2023

---------------------- Page: 1 ----------------------
ISO/DTR 9143:2023(E)
FINAL
TECHNICAL ISO/DTR
DRAFT
REPORT 9143
ISO/TC 215
Health informatics — Sex and gender
Secretariat: ANSI
in electronic health records
Voting begins on:
Voting terminates on:
COPYRIGHT PROTECTED DOCUMENT
© ISO 2023
All rights reserved. Unless otherwise specified, or required in the context of its implementation, no part of this publication may
be reproduced or utilized otherwise in any form or by any means, electronic or mechanical, including photocopying, or posting on
the internet or an intranet, without prior written permission. Permission can be requested from either ISO at the address below
or ISO’s member body in the country of the requester.
RECIPIENTS OF THIS DRAFT ARE INVITED TO
ISO copyright office
SUBMIT, WITH THEIR COMMENTS, NOTIFICATION
OF ANY RELEVANT PATENT RIGHTS OF WHICH
CP 401 • Ch. de Blandonnet 8
THEY ARE AWARE AND TO PROVIDE SUPPOR TING
CH-1214 Vernier, Geneva
DOCUMENTATION.
Phone: +41 22 749 01 11
IN ADDITION TO THEIR EVALUATION AS
Reference number
Email: copyright@iso.org
BEING ACCEPTABLE FOR INDUSTRIAL, TECHNO­
ISO/DTR 9143:2023(E)
Website: www.iso.org
LOGICAL, COMMERCIAL AND USER PURPOSES,
DRAFT INTERNATIONAL STANDARDS MAY ON
Published in Switzerland
OCCASION HAVE TO BE CONSIDERED IN THE
LIGHT OF THEIR POTENTIAL TO BECOME STAN­
DARDS TO WHICH REFERENCE MAY BE MADE IN
ii
  © ISO 2023 – All rights reserved
NATIONAL REGULATIONS. © ISO 2023

---------------------- Page: 2 ----------------------
ISO/DTR 9143:2023(E)
Contents Page
Foreword .iv
Introduction .v
1 Scope . 1
2 Normative references . 1
3 Terms, definitions and abbreviated terms . 1
3.1 Terms and definitions . 1
3.2 Abbreviated terms . 2
4 Background . 3
5 Current state . 3
6 Challenges . 4
6.1 Overview . 4
6.2 Electronic health record­related challenges . 4
6.3 Person­level challenges in EHR .
...

ISO/DTR 9143:2023(E)
ISO TC 215/WG 3
Date: 2023-04-0607-10
Health informatics - Sex and Gender in Electronic Health Records

DTR stage

Warning for WDs and CDs
This document is not an ISO International Standard. It is distributed for review and comment. It is subject to change
without notice and may not be referred to as an International Standard.
Recipients of this draft are invited to submit, with their comments, notification of any relevant patent rights of which
they are aware and to provide supporting documentation.


Secretariat: ANSI
Health informatics - Sex and gender in electronic health records

---------------------- Page: 1 ----------------------
ISO/DTR 9143:2023(E)
© ISO 2023
All rights reserved. Unless otherwise specified, or required in the context of its implementation, no part of
this publication may be reproduced or utilized otherwise in any form or by any means, electronic or
mechanical, including photocopying, or posting on the internet or an intranet, without prior written
permission. Permission can be requested from either ISO at the address below or ISO’s member body in the
country of the requester.
ISO copyright office
CP 401 • Ch. de Blandonnet 8
CH-1214 Vernier, Geneva
Phone: +41 22 749 01 11
Email: copyright@iso.org
Website: www.iso.orgwww.iso.org
Published in Switzerland

ii © ISO 2023 – All rights reserved

---------------------- Page: 2 ----------------------
ISO/DTR 9143:2023(E)
Contents
Introduction. 5
Background . 6
1 Scope . 8
2 Normative references . 8
3 Terms, definitions, and abbreviated terms . 8
3.1 Terms and definitions 8
3.2 Abbreviated terms 9
4 Technical Background . 9
5 Current State . 10
6 Challenges . 11
6.1 Overview 11
6.2 Electronic Health Record (EHR)-Related Challenges 11
6.3 Person-Level Challenges 12
6.4 Cultural and Linguistic Challenges 13
7 Opportunities . 14
7.1 Overview 14
7.2 Benefits 15
Annex A (informative) . 16
Identities Which Can Be Considered as Falling Under the Nonbinary Umbrella . 16
Annex B (informative) . 18
Identities Which Can Be Considered to Be Gender-Diverse . 18
Annex C (informative) Conditions Which Can Be Considered to Be Intersex . 25
Annex D (informative) Published Data Elements for gender and sex international standards . 30
Bibliography . 34


© ISO 2023 – All rights reserved iii

---------------------- Page: 3 ----------------------
ISO/DTR 9143:2023(E)
Foreword . iv
Introduction.
...

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