WHAT ISSUES RAISED BY PROPOSERS AND

REVIEWERS OF THE URC PLATFORM POINT

TO A NEED FOR AN ONTOLOGICAL REVIEW?

J Jelsma1 M Cuenot21 South African CC, University of Cape Town

2 French CC, Ecole des Hautes Etudes en Santé Publique (EHESP),

Background

Starting point:

• Why do some proposals lead to so much discussion and

sometimes the issues raised seem insoluble?

• Could it be that there are fundamental problems with the

existing structure that are being highlighted by these

proposals?

• If so, what are the implications of these problems for

ongoing revision of the ICF?

Method

• All proposals submitted for review on the Update and Revision Platform undergo a standardised review process, in collaboration with members of the FDRG, and often leading to modification before a final vote by members of the URC.

• An analysis of the nature of the reviews proposed and the reviewer’s comments was undertaken to identify the type of issues raised.

• Specific issues relating to the fundamental structure of the ICF were identified.

Example

• d4107 Rolling over

• note

• Moving the body from one position to another while lying such as turning from side to side or from stomach to back

Included under

d410-d429 CHANGING AND MAINTAINING BODY POSITION

• d410 Changing basic body position

•What could be easier?

Placement

Proposal Suggested insertion Comments

d4107 Rolling over

note

Moving the body from

one position to another

while lying such as

turning from side to side

or from stomach to back

Would rolling fit better

under

Developmental sequencing

Proposal Comments

d4107 Rolling over

note

Moving the body from

one position to another

while lying such as

turning from side to side

or from stomach to back

d410-d429 CHANGING

AND MAINTAINING

BODY POSITION

d410 Changing basic

body position

Rolling is developed at

about 6 months.

Squatting only after

about 8 months – does it

make sense for it to be

inserted after Squatting,

standing and kneeling?

d4100 Lying down

d4101 Squatting

d4102 Kneeling

d4104 Standing

d4106 Shifting the body's

centre of gravity?

Issues identified

Structure:

• Placement of codes- multi-parent codes?

• Developmental sequencing – related to insertion of codes

within existing codes

• Basic/ complex: parent codes

• Function/expression of that functioning

• Granularity

• Boundaries

• Temporality

• Special groups

Placement of codes – case of play in

childrenProposal Comments

Subcategories d8800,

d8801 etc were added to

the ICF-CY : when children

engage in play they are not

engaging in leisure activities

but rather in a major life

activity analogous to work

or education in adults.

Other major life areas

(d880-d889)

d880 Engagement in play

d8800 Solitary play

d8801 Onlooker play

d8802 Parallel play

d8803 Shared cooperative

play

Adding these codes,

given that d9200

Play already exists,

implies that children can

sometimes play as a

major life activity and

sometimes play as a

leisure activity: this

creates confusion.

Placement of codes – case of

communicationProposal Comments

d530 Toileting

note

Indicating the need for,

planning and carrying

out the elimination of

human waste

(menstruation, urination

and defecation), and

cleaning oneself

afterwards.

‘Indicating the need for’ is a

communication task that is separate to

the physical activity of eliminating human

waste.

To indicate the need to eliminate human

waste is a communicative act. Indicating

need also applies to many needs and

indeed many activities (e.g., eating,

sleeping, drinking, washing, moving,

most self-care, chapter 5, chapter 6).

Communication underlies almost all

areas of activities and participation.

Therefore, including ‘indicating need’ as

part of the eliminating human waste

activity runs the risk that it will have to be

included in many other areas.

Indicating need probably belongs as

an additional example or code in

Communication chapter 3

Placement of codes – case of

communicationProposal Comments

d332 SingingnoteProducing tones in a

sequence resulting in a melody or performing songs on one’s own or in a group.

Singing is an example in the

category “d9202 Arts and culture”

but not in communication. Certainly

singing is a form of communication

but also are many other

communicative activities, such as

writing poetry, chanting and

repeating liturgy. Why should we

single out singing and not the

others?

Developmental sequencing/logical order

Proposal Comments

d132 Acquiring

language

d134 Acquiring

information

d137 Acquiring

concepts

d1370 Acquiring basic

concepts

d1371 Acquiring

complex concepts

The order needs to be

amended again to a more

logical order. As acquiring

concepts is required for

acquiring knowledge as

defined, the codes relating

to the acquisition of

concepts have to be

presented first.

d137 Acquiring concepts

d1370 Acquiring basic

concepts

d1371 Acquiring complex

concepts

d138 Acquiring information

Placement of codes – case of

communicationProposal Comments

d7107 Taking turns in

social interactions

Sharing ability to

alternate activity in non-

verbal social

interactions, as a

playground equipment or

in games.

Exclusion: Starting a

conversation

(d3500); Sustaining a

conversation (d3502)

Taking turns in social

interactions does not

need to be included

amongst the basic

interpersonal

interactions. It is one

example of Interacting

according to social rules,

a complex interpersonal

interaction. Suggest add

as an inclusion to d7203

Confusion in parent code

Proposal Comments

This proposal may come

unstuck with ontological

modelling. There seem to be

two concepts under the

one parent code. Types of

memory (short, long and

working) mixed with exercise

of memory retrieval and

processing which may be

better linked with functions to

establish memory.

The differentiation between

the modified existing code

b1442 “Retrieval & processing

of memory” and b1443

“Working memory” is unclear.

Basic/complex

• constructs within A&P (e.g. “d210: undertaking multiple

tasks”) which can be considered as parent concepts to

other constructs in the same component (e.g. “d630

preparing meals”)

Basic/complex

Proposal Comments

b163 Basic cognitive

functions

Mental functions involved in

acquisition of knowledge about

objects, events and

experiences; and the

organization and application of

that knowledge in tasks

requiring mental activity.

Inclusion:functions of cognitive

development of representation,

knowing and reasoning

Exclusion: higher level cognitive

functions (b164)

The concept b163 Basic

cognitive functions might

make sense as opposed

to b164 Higher-level

cognitive functions, but as

such it is potentially a

ragbag of many other

concepts listed in the whole

block b140-b189

Specific mental

functions (Attention

functions, Memory

functions, Psychomotor

functions, Emotional

functions, Perceptual

functions, Thought

functions, etc.)

Differentiation between function and the

observable function• some constructs with similar meaning (e.g. “b16711

expression of written language” and “d345 writing

messages”) and hardly differentiable by observation are

positioned in different components of the classification

with not mutually exclusive attributes.

Differentiation between function and the

observable functionProposal Comments

Is it possible to differentiate

the functions of retrieving a

memory, processing a

memory and working

memory by assessment

processes?

The case of special education

e585 Education and training services, systems and policies

note: Services, systems and policies for the acquisition, maintenance and improvement of knowledge, expertise

and vocational or artistic skills. See UNESCO's International Standard Classification of Education (ISCED-1997).

Inclusions: general and special education

e5850 General Eeducation and training services

note: Services and programmes concerned with general [former proposal ID 191, rejected] education and the

acquisition, maintenance and improvement of knowledge, expertise and vocational or artistic skills, such as those

provided for different levels of education (e.g. preschool, primary school, secondary school, post-secondary

institutions, professional programmes, training and skills programmes, apprenticeships and continuing education),

including those who provide these services.

e5851 General Eeducation and training systems

note: Administrative control and monitoring mechanisms that govern the delivery of general education

programmes, such as systems for the implementation of policies and standards that determine eligibility for public

or private education and special needs-based programmes; local, regional or national boards of education or

other authoritative bodies that govern features of the education systems, including curricula, size of classes,

numbers of schools in a region, fees and subsidies, special meal programmes and after-school care services.

e5852 General Eeducation and training policies

note: Legislation, regulations and standards that govern the delivery of generaleducation programme, such as

policies and standards that determine eligibility for public or private education and special needs-based

programmes, and dictate the structure of local, regional or national boards of education or other authoritative

bodies that govern features of the education system, including curricula, size of classes, numbers of schools in a

region, fees and subsidies, special meal programmes and after-school care services.

The case of special educatione5853 Special education and training services

note: Services and programmes concerned with special education and the acquisition,

maintenance and improvement of knowledge, expertise and vocational or artistic skills, such as

those provided for different levels of education (e.g. preschool, primary school, secondary school,

post-secondary institutions, professional programmes, training and skills programmes,

apprenticeships and continuing education), including those who provide these services.

e5854 Special education and training systems

note: Administrative control and monitoring mechanisms that govern the delivery of special

education programmes, such as systems for the implementation of policies and standards that

determine eligibility for public or private education and special needs-based programmes; local,

regional or national boards of education or other authoritative bodies that govern features of the

education systems, including curricula, size of classes, numbers of schools in a region, fees and

subsidies, special meal programmes and after-school care services.

e5855 Special education and training policies

note: Legislation, regulations and standards that govern the delivery of special education

programmes, such as policies and standards that determine eligibility for public or private

education and special needs-based programmes, and dictate the structure of local, regional or

national boards of education or other authoritative bodies that govern features of the education

system, including curricula, size of classes, numbers of schools in a region, fees and subsidies,

special meal programmes and after-school care services.

The case of special education

• ‘Special education’ is not well defined and it is a concept that can

evolve.

• But it is a term well recognized in policy and by families. It is a reality

that has to be recognized although no general definition exists.

• The introduction of ‘special education’ went against the structure of

chapter e5 of ICF. It introduced a granularity which was not present for

other codes of the same chapter.

• Special needs exist not only in school but also in transports, health,

work, etc. If services for are coded separately, there is a risk of

marginalization of those services.

• Others noted that, in e585, the term ‘education’ as such includes both

general and special education. If necessary (but maybe not, see e585),

a distinction between general education and special education might be

introduced at a lower level. The problem is at what level of the

classification ‘special education’ should be included.

• Moreover, titles of codes should be mutually exclusive.

The case of special education

Another suggestion would be to think of a new "transversal" code

(usable across all service systems) for individual support or

assistance (individual support or assistance services, individual

support or assistance systems, individual support or assistance

policies). This would also pick up on the trend to create person-

centred rather than system-centred services.

Much will also depend on the future content model of the ICF. We

may be able to code several dimensions separately in the future: for

example availability, accessibility, adaptability, acceptability

Special user groups

• Are children a special group?

• If we have specific codes for children, should we have

specific codes for other groups?

• If we have “special education” should we also have

“special transport”, “special workplaces” etc.?

Granularity

Proposal Comments

e3100 Support from

mother

e 3101 Support from

father

e3102 Support from

spouse/partner

e 3103 Support from

siblings

e 3104 Support from

son

e3105 Support from

daughter

e3106 Support from

grandparents

These proposals

introduce a level of

detail into the

Environmental Factors

codes which is not there

in many other codes, so

they introduce apparent

imbalance into Chapters

3 and 4 of EF.

The list does not cover

all the present

inclusions.

Granularity

Proposal Comments

s11000 Frontal lobe, white

matter

s11001 TemporalFrontal lob

e, grey matter

s11002 ParietalTemporal lob

e, white matter

s11003 OccipitalTemporal lo

be, grey matter

s11004 Parietal lobe, white

matter

s11005 Parietal lobe, grey

matter

s11006 Occipital lobe, white

matter

s11007 Occipital lobe, grey

matter

This level of granularity is

rarely required in clinical

practice as the information is

often not available in the

absence of sophisticated

imaging. This in comparison

with the lack of detail in the

other brain structure

classifications does not

make sense to me. Do we

need to differentiate between

the substantia nigra and other

parts of the basal ganglia,

white and grey matter in the

spinal cord etc?

Boundaries

Proposal Comments

Genetic diseases are not

found within the structural

aspects of the

ICF classification and we

have some diseases such

as Sd. Down that

affects chromosome

structure and thereare func

tional deficiencies, activity

limitations and participatio

n restrictions, we do not

find how to do it from the

structure in the

classification

It is not clear what ‘genetic structure’ refers to – a person’s genotype,

a specific gene, a chromosome structure, the overall genetic code of

an individual, the overall genetic structure of human beings, and so

on.

- Would ‘genetic structure’ be a single code, but then at what level; if

at 2nd or 3rd level, what would there be embedded codes?

- The proposed classification entity lacks plausibility, since the ICF

explicitly limits the scope of functioning to the observable level: “Thus

impairments coded using the full version of ICF should be

detectable or noticeable by others or the person concerned by

direct observation or by inference from observation.” To now

bring in an additional item that was below this threshold (i.e. that is, an

item that was not detectable or noticeable by direct observation or

inferable from observation) would be an exception to the structure of

the ICF that logically would require the additional of all sub-observable

biological functions and structures. This would require a massive

alteration in the ICF, even if it were feasible to do so.

Temporal aspectsEnvironmental Factor ?

Time is a barrier to communication for people with little or no speech - either lack of time or the addition of time can influence the success of a communicative interaction. The most recent publication on this subject arises from my postdoctoral work examining communication in hospital for people with the most severe communication disabilities - little or no speech. The reference for the publication is:

Title: Nursing the patient with complex communication needs: time as a barrier and a facilitator to successful communication in hospital.Author(s): Hemsley, B.; Balandin, S.; Worrall, L.Source: J Adv Nurs Volume: 68 Issue: 1 Pages: 116-26 Published: 2012

This is just one example of research indicating that time can function as both a barrier and a facilitator to better communication.

This instance of 'time' does not relate to 'orientation' but rather to 'duration' of available time or time spent - which might allow additional environmental factors such as use of tools or strategies to proceed.

Conclusions

CartoonStock

Acknowledgements

• Funding from the University of Cape Town Research

Committee is gratefully acknowledged.

• The review process is made possible by the thoughtful

participation of FDRG and URC members. Their

commitment, insight and dedication are recognised