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Health information systems and

rehabilitation

Key messages
• Health information systems (HIS) underpin decision-making in health policy, management
and clinical care through the collection, standardization, coding and management of
information relevant to indicators of health status, determinants of health, and health
systems.
• Improving the capacity of national HIS to collect reliable and comprehensive information
is crucial for health systems strengthening, both nationally and internationally.
• WHO has developed a framework and standards for national HIS and a global reference
list of 100 core health indicators to support countries to strengthen their HIS. There are
opportunities to further expand this framework to capture the information needs of
rehabilitation.
• Including information on functioning in HIS is essential for strengthening rehabilitation in
the health system. “Functioning”, as introduced in WHO’s International classification of
functioning, disability and health (ICF), refers to the impact of health conditions (injuries,
diseases, ageing) on a person’s experience in every aspect of his/her life.
• As well as information on functioning, systems level information about all aspects of the
delivery and financing of rehabilitation services is necessary. This includes inputs (e.g. policy,
financing, human resources and infrastructure) to, and outputs (e.g. service availability
and quality) and outcomes (e.g. service coverage and utilization) of, rehabilitation.
• The WHO meeting on Rehabilitation 2030: A call for action calls for stakeholders to enhance
HIS by including system level rehabilitation data and information on functioning, utilizing
the ICF.

Health information systems (HIS)

HIS are used to collect, standardize, code and manage information relevant to indicators of
health status, determinants of health, and health systems. This sort of information is needed
by: policy-makers to identify and respond to problems with evidence-based solutions, and
to allocate resources effectively; planners to design more effective services, and managers
to monitor and evaluate these services; and clinicians to provide high quality and evidence-
based care.(1) Thus HIS underpin health and health-related decision-making in health policy,
management and clinical care.

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© WHO 2017. Some rights reserved. This work is available under the CC BY-NC-SA 3.0 IGO licence.
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Many low- and middle-income countries lack robust and effective HIS and often cannot afford
to invest in data collection and analysis.(2) Even in developed HIS, data that are out of date or
incomplete may be used. As a consequence, decision-makers at all levels of the health system
may lack the information they need to identify problems and needs, to allocate resources
optimally or to provide evidence-based services. This can result in a significant gap between
what policy-makers, health professionals and researchers know and what they need to know
to improve the health of the population.(3) Furthermore, weak national HIS and associated
paucity of relevant data are major challenges for monitoring progress in achieving Sustainable
Development Goal 3 (SDG3): ensure healthy lives and promote well-being for all at all ages.(4)

Health information and data sources

To support countries in strengthening their HIS, WHO has developed a framework and standards
for national health information systems,(1) and a global reference list of 100 core health indicators
in line with this framework.(5) In the framework, three domains of measurement for HIS are
recognized: health status, health system and determinants of health (Figure 1).

Figure 1: Domains of measurement of health information systems based on Figure 3 presented in Framework and standards for country health
information systems, second edition. Geneva: World Health Organization, 2012

Determinants of health
• Socioeconomic and demographic determinants
• Environmental determinants
Health status
• Mortality

Health systems • Morbidity

Inputs Outputs Outcomes • Functioning

Policy Information Service
Financing Service coverage
• Well-being
Human availability Utilization
resources and quality

Organization and
management

Relevant data to cover these domains are generated from population sources (censuses, civil
registries, household and other population surveys) and from health or other institutional sources
(individual clinical records, service records, resource records). Health research is also an essential
source of information for decision-making.

Not all of this information is collected within the health system however, and it is important
that a national HIS is able to link with, and collect comparable data from, other governmental
agency statistical offices (e.g. for vital statistics), and from ministries of social affairs, labour and
education (for socioeconomic information).

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Rehabilitation-relevant information
Health status information in national HIS is typically focused on three indicators: mortality, the
indicator of a population’s length of life and the survival of individuals with health conditions;
morbidity, the indicator of the distribution of health conditions in the population, and the use
of health services. Recently, because of demographic shifts such as population ageing and
the epidemiological trend towards increased prevalence of noncommunicable diseases,
there have been calls to expand the range of health status indicators to include those related
to functioning.(6,7,8) “Functioning” is the term introduced in WHO’s International classification
of functioning, disability and health (ICF) (9) to identify all dimensions of the impact of health
conditions (injuries, diseases, and ageing) on an individual’s experience in the context of his/
her life. The ICF provides a complete internationally standardized language and coding system
for data comparability. Information on functioning according to the ICF includes information
about body functions and structures, as well as information on activities and participation. The
ICF also includes the environmental factors that may have an impact on functioning.

Information on functioning is essential to decision-making in rehabilitation at all levels of the

health system since the goal of rehabilitation is to optimize functioning in light of impairments,
injuries, and acute or chronic diseases:
• At user level, information on functioning guides goal setting and outcome evaluation across
the continuum of rehabilitation care (at service provision level [primary, secondary and tertiary]
and in the treatment phases [acute care, post-acute care and long-term care]).
• At facility or programme level, information on functioning from users can be aggregated
to help monitor clinical outcomes and improve service planning and quality assurance.
• At policy level, aggregated clinical information on functioning gives policy-makers a source
of evidence for planning health and rehabilitation services and monitoring their impact.

Although functioning is of vital importance as an impact indicator to the success of rehabilitation

within the health system, it is not the only information that needs to be collected by national HIS
for rehabilitation decision-making. Information about service delivery and financing is needed
for clinical, managerial and policy decisions concerning rehabilitation; this information can be
classified as:
• inputs (e.g. total current expenditure on rehabilitation, out-of-pocket payment, density and
distribution of rehabilitation professionals);
• outputs (e.g. utilization of rehabilitation services, availability of essential assistive products);
• outcomes (e.g. coverage of rehabilitation services for persons with specific health conditions
such as spinal cord or traumatic brain injury, coverage of essential assistive products).

In addition, to fully capture the rehabilitation needs at population level and the range of
relevant rehabilitation interventions required, with details on their efficacy, information about the
socioeconomic, demographic, genetic, and behavioural determinants of declines in functioning
must also be systematically collected.

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Looking forward
Too often, national HIS do not adequately integrate rehabilitation-related information. This
hampers decision-making at all levels and is one of the obstacles to strengthening rehabilitation
services around the world. A key action to strengthen rehabilitation, called for during the WHO
Rehabilitation 2030: A call for action meeting, is to collect information relevant to rehabilitation to
enhance health information systems, including system level rehabilitation data and information
on functioning, utilizing the ICF. Although there is much work to be done to address this call for
action, we can look to the future with optimism as many of the existing data sources that national
HIS traditionally draw upon can easily be modified or expanded to meet the informational needs
of rehabilitation.

Figure 2 suggests the kinds of information relevant to rehabilitation that could plausibly be
collected by the six traditional HIS data sources, as well as how this information might be used
to strengthen rehabilitation and improve decision-making at all levels. In some instances, the
described modifications or enhancements have already been implemented, although often
these data are not fully utilized. Other ways to modify or enhance existing data collection
sources are certainly possible and need to be explored and tested. The ultimate goal is to
create concrete guidance for countries on how to enrich their HIS with rehabilitation-related
information, to strengthen the health system in general and rehabilitation services in particular.

References
1. Framework and standards for country health information systems. Second edition. Geneva: World Health
Organization, 2012.
2. Upadhaya N, Jordans MJ, Abdulmalik J, Ahuja S, Alem A, Hanlon C et al. Information systems for mental health
in six low and middle income countries: cross country situation analysis. Intern J Mental Health Sys. 2016;10:60.
3. Heeks R. Health information systems: Failure, success and improvisation. Intern J Med Informatics. 2006;75(2):125–37.
4. World Health Statistics 2016. Monitoring health for the SDGs. Geneva: World Health Organization, 2016.
5. 2015 Global reference list of 100 core health indicators. Geneva: World Health Organization, 2015.
6. Bradley SM, Rumsfeld JS, Ho PM. Incorporating health status in routine care to improve health care value: the VA
patient reported health status assessment (PROST) system. JAMA. 2016;316(5):487–8.
7. World Health Organization. The global strategy and action plan on ageing and health 2016–2020 (http://who.
int/ageing/GSAP-Summary-EN.pdf?ua=1, accessed 15 January 2017).
8. Stucki G, Bickenbach J, Melvin J. Strengthening rehabilitation in health systems worldwide by integrating
information on functioning in national health information systems. Am J Phy Med & Rehabil. 2016,Dec 15.

This background paper was prepared by WHO for the meeting on

Rehabilitation 2030: A Call for Action.

WHO/NMH/NVI/17.2
 Figure 2. Data sources and information for decision-making and strengthening rehabilitation

Information Information
Information on functioning Information on functioning and determinants of
functioning (health conditions, and environmental
How the information could be used and personal factors)
Policy decisions on rehabilitation services planning
based on a very rough estimation of the distribution How the information could be used
of problems in functioning and population trends • Definition of targets and outcomes
• Clinical decision-making
Individual • Outcome evaluation
Censuses
records

Information Information
Information about impairments, activity limitations Information about facility performance across the
and participation restrictions, environmental continuum of rehabilitation care
facilitators and barriers and services required as part
of the disability evaluation process Social Service
How the information could be used
registries records • Decisions on quality management of rehabilitation
How the information could be used services
• Policy decisions on access to rehabilitation ser- • Estimates of rehabilitation services utilization
vices for specific populations in need • Benchmarking
• Input planning and service

Population Resource
Information surveys records
Information on functioning and determinants of
functioning (health conditions, and environmental
and personal factors) Information
Information on national rehabilitation capacity
How the information could be used (governance, financing, service delivery, human
• Guiding rehabilitation policy and services develop- resources, assistive technology, emergency
ment based on the estimation of population needs preparedness) and performance
for rehabilitation according to:
- the distribution of problems in functioning and How the information could be used
population trends • Policy decision for sustainable rehabilitation
- rehabilitation access information services strengthening and human resources
- identification of environmental barriers development

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Population based Institution based
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