(Trans)Gender Identity in the ICD-11: Finding the Right Balance Dr. Geoffrey M. Reed Department of Mental Health and Substance Abuse 20 th World Congress.

(Trans)Gender Identity in the ICD-11: (Trans)Gender Identity in the ICD-11: Finding the Right BalanceFinding the Right Balance

Dr. Geoffrey M. ReedDr. Geoffrey M. Reed

Department of Mental Health and Substance Abuse Department of Mental Health and Substance Abuse

(Trans)Gender Identity in the ICD-11: (Trans)Gender Identity in the ICD-11: Finding the Right BalanceFinding the Right Balance

Dr. Geoffrey M. ReedDr. Geoffrey M. Reed

Department of Mental Health and Substance Abuse Department of Mental Health and Substance Abuse

20th World Congress for Sexual HealthGlasgow, Scotland, UK

13 June 2011

Glasgow, UK | 13 June 20112 |

World Health OrganizationWorld Health OrganizationWorld Health OrganizationWorld Health Organization

Specialized agency of UN established in 1948

Mission of WHO is the attainment by all peoples of the highest possible level of health

From WHO's inception, health has explicitly included mental health

Health classifications are core Health classifications are core constitutional responsibility of WHO, constitutional responsibility of WHO, ratified by treaty with 193 member ratified by treaty with 193 member countriescountries


Purposes of ICDPurposes of ICDPurposes of ICDPurposes of ICD

WHO member countries agree to use ICD as standard for health information and reporting

Basis for:Basis for:

Assessment and monitoring of mortality, morbidity, injuries, external causes, other health parameters

Tracking epidemics and disease burden

Identifying appropriate targets of health care resources

Accountability


ICD-10 RevisionICD-10 RevisionICD-10 RevisionICD-10 Revision

Mandated by World Health AssemblyWorld Health Assembly (Health Ministers of all WHO Member Countries)

ICD-10 completed in 1990; longest time without revision in history of ICD

Covers allall areas of diseases, disorders, and injuries, and health conditions; diagnostic standard for medicine

ICD revision process involves many international professional associations, scientific societies, disease-based groups; and advocacy organizations working on on behalf of ICD and WHObehalf of ICD and WHO


MSD ResponsibilitiesMSD ResponsibilitiesMSD ResponsibilitiesMSD Responsibilities

WHO Department of Mental Health and Substance Abuse Department of Mental Health and Substance Abuse responsible for revision of:

– Mental and Behavioural DisordersMental and Behavioural Disorders

– Diseases of the Nervous SystemDiseases of the Nervous System

Assisted by International Advisory Group in each area

Participate in Revision Steering Group for overall ICD revision

Technical work on Mental and Behavioural Disorders to be completed by end of 2013

Approval of ICD-11 by World Health Assembly expected: 2014 – 20152014 – 2015


Mental and Behavioural Disorders – I Mental and Behavioural Disorders – I Mental and Behavioural Disorders – I Mental and Behavioural Disorders – I


Mental and Behavioural Disorders – II Mental and Behavioural Disorders – II Mental and Behavioural Disorders – II Mental and Behavioural Disorders – II


WHO ICD ConstituenciesWHO ICD ConstituenciesWHO ICD ConstituenciesWHO ICD Constituencies

Member Countries Member Countries – Required to report health statistics to WHO according to ICD– Use ICD categories for eligibility and paymenteligibility and payment of health

care, social, and disability benefits and services

Health ProfessionalsHealth Professionals– Multiple mental health professions– Most mental disorders treated in primary care, must be useful

for front-line service providers

Service Users/ConsumersService Users/Consumers– ‘Nothing about us without us!’– Opportunities for substantive and continuing input


ICD Revision Orienting PrinciplesICD Revision Orienting PrinciplesICD Revision Orienting PrinciplesICD Revision Orienting Principles

1. Highest goal is to help WHO member countries reduce help WHO member countries reduce disease burden of mental and behavioural disordersdisease burden of mental and behavioural disorders: relevance of ICD to public health

2. Focus on clinical utilityclinical utility: facilitate identification and treatment by global front-line health care providers, especially in low low and middle-income countriesand middle-income countries

3.3. MultidisciplinaryMultidisciplinary, global, multilingualglobal, multilingual development

4. Must be undertaken in collaborationcollaboration with stakeholders

5. Integrity of system depends on independence from independence from pharmaceutical and other commercial influencepharmaceutical and other commercial influence


The Treatment GapThe Treatment GapThe Treatment GapThe Treatment Gap

Mental disorders contribute heavily to global disability and disease burden (WHO, 2008)

Serious mental disorders receiving no treatment during past year:– Developed countries- 35.5 to 50.3%– Developing countries- 76.3 to 85.4%

(World Mental Health Survey Group, JAMA, 2004)

‘Treatment gap’ is 32 to 78%, depending on disorder (Kohn, Saxena, Levav, Saraceno, Bull of WHO, 2004)


Lack of treatment leads to human rights abusesLack of treatment leads to human rights abusesLack of treatment leads to human rights abusesLack of treatment leads to human rights abuses


Scarcity of Human ResourcesScarcity of Human Resources(N=157 to 183 countries)(N=157 to 183 countries)

Scarcity of Human ResourcesScarcity of Human Resources(N=157 to 183 countries)(N=157 to 183 countries)


Importance of Primary CareImportance of Primary CareImportance of Primary CareImportance of Primary Care

Worldwide, psychiatrists provide only a tiny proportion of mental health services

When people with mental disorders do receive treatment, they are far more likely to receive it in primary care settings

Mental health specialists alone cannot address treatment gap

A primary focus of the ICD revision is to provide a version version of ICD-11 mental disorders classifications that is of ICD-11 mental disorders classifications that is feasible and clinically useful for primary care settingsfeasible and clinically useful for primary care settings


Clinical Utility as Organizing PrincipleClinical Utility as Organizing PrincipleClinical Utility as Organizing PrincipleClinical Utility as Organizing Principle

The ideal: scientific validity and and clinical utility

At present, neuroscience and genetics evidence does not support major changes for individual conditions or provide definitive support for specific structure

WHO views current revision as major opportunity to improve utilityutility of the system


Clinical Utility: WHO Working ModelClinical Utility: WHO Working ModelClinical Utility: WHO Working ModelClinical Utility: WHO Working Model

Clinical utility Clinical utility of concept relates to:

Value in communicatingcommunicating (e.g., among practitioners, patients, families, administrators)

ImplementationImplementation in clinical practice: Goodness of fit (accuracy), ease of use, time required (feasbility)

Usefulness in selecting interventions selecting interventions and for clinical management management decisions

Improvement in clinical outcomes clinical outcomes at individual level and health status health status at population level


First QuestionFirst QuestionFirst QuestionFirst Question

Should we have categories to represent transgender phenomena as a part of a classification of health conditions?

1.Tracking epidemics/threats to public health/disease burden

2.To identify vulnerable/at risk populations

3.To define obligations of WHO Member States to provide free or subsidized health care to their populations

4.To facilitate access to appropriate health care services

5.As a basis for guidelines for care and standards of practice


First QuestionFirst QuestionFirst QuestionFirst Question

Should we have categories to represent transgender phenomena as a part of a classification of health conditions?

1.Tracking epidemics/threats to public health/disease burden

2.To identify vulnerable/at risk populations

3.To define obligations of WHO Member States to provide free or subsidized health care to their populations

4.To facilitate access to appropriate health care services

5.As a basis for guidelines for care and standards of practice

✔

✔✔

✔


Second QuestionSecond QuestionSecond QuestionSecond Question

How should category or categories categories related to transgender phenomena be conceptualized?Transsexualism? (ICD-10 F64)

A desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one's anatomic sex and a wish to have hormonal treatment and surgery to make one's body as congruent as possible with the preferred sex.

Gender identity disorder?Gender incongruence?Gender dysphoria?Effects of social oppression related to transgender identity?Same for adults and children?


Third QuestionThird QuestionThird QuestionThird Question

Where should categories related to transgender phenomena be placed in the classification?

Mental and behavioural disorders?

Factors influencing health status and contact with health services?

Signs and symptoms?

Reproductive health?

Sexual health?

Other?


Working GroupWorking GroupWorking GroupWorking Group

The WHO Department of Mental Health and Substance Abuse WHO Department of Mental Health and Substance Abuse and the WHO Department of Reproductive Health and Research WHO Department of Reproductive Health and Research will appoint a Working Group on Sexual Disorders and Sexual HealthWorking Group on Sexual Disorders and Sexual Health as part of the ICD revision process

Working Group will appoint jointly to the ICD Advisory Group for Advisory Group for Mental and Behavioural DisordersMental and Behavioural Disorders and the Advisory Group for Advisory Group for Reproductive HealthReproductive Health

Will also provide liaison to the Pediatric Advisory Group and other classification areas as appropriate

Charge is to review evidence, submitted proposals, and develop draft of ICD-11 classification for consideration by Advisory Groups, public comment, and field testing


Revision ProposalsRevision ProposalsRevision ProposalsRevision Proposals

Can be made by anyone

Proposal form and guide available in English, Spanish, and French

Proposals may be submitted in these languages

Submit to [email protected]

Will be referred to appropriate Working Group

Should be received no later than December 31, 2011









To reflect changes in the social understanding or view of diseases or disorders (e.g., removal of stigmatizing terms): This option applies in situations in which terms used in the ICD-10 are stigmatizing and may be considered demeaning by service users. Examples include the terms ‘mental retardation’ and ‘dementia’. It also may apply in situations where behavior that was previously considered inherently disordered is now more broadly considered to be normal variation in response and behavior, such as may apply to some of the categories included under Disorders of sexual preference (F65). It may also apply to proposals from various consumer groups to move particular conditions out of the chapter on Mental and Behavioural Disorders to another part of the ICD.






Required Content for Required Content for Each ICD-11 CategoryEach ICD-11 CategoryRequired Content for Required Content for Each ICD-11 CategoryEach ICD-11 Category

I. I. Category NameCategory Name

II. II. Relationship to ICD-10Relationship to ICD-10

III. III. Primary ‘Parent’ CategoryPrimary ‘Parent’ Category

IV. IV. Secondary ‘Parent’ Secondary ‘Parent’ CategoryCategory

V. V. ‘Children’ or Constituent‘Children’ or Constituent CategoriesCategories

VI. VI. SynonymsSynonyms

VII. VII. DefinitionDefinition

VIII. VIII. Diagnostic GuidelinesDiagnostic Guidelines

IX. Functional PropertiesX. Temporal QualifiersXI. Severity QualifiersXII. Differential DiagnosisXIII. Differentiation from NormalityXIV. Developmental PresentationsXV. Course FeaturesXVI. Associated Features and ComorbiditiesXVII. Culture-Related FeaturesXVIII. Gender-Related Features

XIX. Assessment Issues


Conclusions – IConclusions – IConclusions – IConclusions – I

Major advances in scientific understanding and changes in social attitudes over the past two decades regarding transgender issues

Strong grass-roots and human rights movement

Suggestions that ICD-10 has been misused

WHO is not invested in maintaining a conceptualization of transgender-linked health conditions as mental disorders

Most proposed alternative conceptualizations are still pathological, and none is entirely satisfactory


Conclusions – IIConclusions – IIConclusions – IIConclusions – II

We need a serious alternative proposal that:

facilitates appropriate access to non-coerced health care

Helps to protect human rights

Is scientifically defensible and grounded in evidence, broadly defined

Has a reasonable chance of being broadly acceptable to transgender people, to health care professionals, to researchers, and to Member States

(Trans)Gender Identity in the ICD-11: Finding the Right Balance Dr. Geoffrey M. Reed Department of Mental Health and Substance Abuse 20 th World Congress.

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