Keywords patient's perspective - electronic health records - international classification of
functioning - disability and health - semantic interoperability - chronic health conditions
Background and Significance
Background and Significance
The delivery of high-quality, efficient, and safe clinical care by multidisciplinary
teams across various institutions and settings requires person-centered health records
capable of capturing and sharing appropriate clinical information. In particular in
the care of people with chronic health conditions, moving from a conventional, disease-specific
care approach to one that is person-centered, individually tailored, and fully integrated
has been promoted to respond best to patients' health and related needs.[1 ]
[2 ] Moving toward a person-centered care approach requires a shift away from assigning
the person receiving care with a passive role in the care process and instead empowering
them to take greater control of their care with shared responsibility between service
users and providers.[3 ]
[4 ]
[5 ] To facilitate this, it is essential that health records capture and facilitate the
sharing of information relevant to all aspects of a person's health, functioning,
and well-being. Electronic health records (EHRs) enable the recording of clinical
information over time and facilitate the sharing of this information between health
care professionals and patient in ways not possible with paper records. Ideally, EHRs
are designed according to widely agreed standards related to content, structure, and
electronic messaging alongside the use of an agreed coding system or terminology,
as these all help facilitate semantic interoperability.[6 ]
Data quality is of pivotal importance in healthcare environments and in particular
where information is to be shared. Key to the ability to share information is the
need for interoperable health records that ideally build upon nationally and internationally
agreed standards for record structure, coding terminologies, and messaging protocols.
Standards on structure and content of information add an important dimension to the
value of information, provide its context so that the precise meaning of the information
is preserved when information is transmitted from one computer to another, and support
semantic interoperability.[7 ]
[8 ]
[9 ] Such standards need to be meaningful and relevant to service users for use throughout
the care process and should be developed with both clinician and patient input and
leadership.[10 ]
[11 ]
[12 ] A fine balance between being able to express the idiosyncrasies of the individual
person and a structured format needs to be achieved.[13 ] In the context of person-centered care, not only medical aspects but also health-related
aspects, such as social, functional, and financial status, have been identified as
being important for documentation[14 ] and are essential for supporting people with chronic health conditions in the self-management
of their health and related needs.[15 ]
[16 ]
The need for documenting not only disease-specific information but also psychosocial
aspects in health has also been expressed by the World Health Organization (WHO) in
the conceptualization of functioning in the International Classification of Functioning,
Disability, and Health (ICF).[17 ] Functioning is an umbrella term and refers to the interaction of a health condition
and its attributes with what people do in their daily lives. It includes contextual
factors, such as availability and access to health services, support of informal and
formal caregivers, and personal lifestyle factors and traits.[18 ]
[19 ] The ICF is complementary to the International Classification of Diseases (ICD) and
contains an exhaustive and mutually exclusive set of more than 1,450 categories to
serve as a unified and consistent standard language of human functioning.
A systematic review has shown that while the ICF is accepted as a conceptual and terminological
standard, its implementation into EHRs is still limited.[20 ] One reason therefore is its complexity and, thus, the need for a reduced, yet agreed
upon number of ICF categories. The challenge is that the ICF categories selected for
consideration in a routine clinical setting must be as exhaustive as possible and
yet remain practical for daily use.[21 ] In response to this challenge, more than 25 ICF Core Sets have been developed based
on a multiphase international consensus process. Each ICF Core Set constitutes a short
list of ICF categories most relevant for patients with a particular health condition.[22 ] Based on empirical data from people aged over 18 years with the respective health
conditions of 22 ICF Core Sets, a minimal generic set of seven ICF categories was
identified, the ICF Generic Set or ICF Generic-7, which contains most relevant aspects
to describe health and functioning across health conditions and the general population.[23 ] Additional 23 ICF categories have been identified in particular for clinical populations.
This extended set of 30 ICF categories is referred to as the ICF Rehabilitation Set
or ICF Generic-30[24 ] and provides a minimum standard set of functioning aspects to describe functioning
across various clinical populations and across the continuum from acute to early post-acute
and long-term care ([Table 1 ]). As functioning and disability occurs in interaction with the environment, a minimal
set of 12 environmental factors has also been identified for use alongside the ICF
Rehabilitation Set.[24 ] These sets can serve as the minimum standard for consistency in recording functioning
information. Though the perspective of individuals living with various health conditions
has been integrated in the development[22 ] and validation of single ICF Core Sets,[25 ]
[26 ]
[27 ] it is unknown whether the ICF Rehabilitation Set reflects most adequately of what
is most important from the perspective of individuals living with a chronic health
condition. Thus, the ICF Rehabilitation Set is a meaningful starting point to identify
chapter headings for EHRs of people with chronic health conditions. In this study,
a chapter heading is understood as a label that groups a unit of data stored in a
field of a EHR. For the acceptance of new innovative systems, such as the exploitation
of EHRs to support person-centered care, the properties of a system need to resonate
well with all stakeholders concerned.[28 ]
[29 ]
[30 ]
Table 1
ICF categories contained in ICF generic and rehabilitation set
ICF code
ICF category
ICF Generic Set (also ICF Generic-7)
ICF Rehabilitation Set (also ICF Generic-30)
b130
Energy and drive functions
✓
✓
b134
Sleep functions
✓
b152
Emotional functions
✓
✓
b280
Sensation of pain
✓
✓
b455
Exercise tolerance functions
✓
b620
Urination functions
✓
b640
Sexual functions
✓
b710
Mobility of joint functions
✓
b730
Muscle power functions
✓
d230
Carrying out daily routine
✓
✓
d240
Handling stress and other psychological demands
✓
d410
Changing basic body position
✓
d415
Maintaining a body position
✓
d420
Transferring oneself
✓
d450
Walking
✓
✓
d455
Moving around
✓
✓
d465
Moving around using equipment
✓
d470
Using transportation
✓
d510
Washing oneself
✓
d520
Caring for body parts
✓
d530
Toileting
✓
d540
Dressing
✓
d550
Eating
✓
d570
Looking after one's health
✓
d640
Doing housework
✓
d660
Assisting others
✓
d710
Basic interpersonal interactions
✓
d770
Intimate relationships
✓
d850
Remunerative employment
✓
✓
d920
Recreation and leisure
✓
Abbreviation: ICF, International Classification of Functioning, Disability, and Health.
Objective
The objective of this project was to specify potential chapter headings aligned with
the ICF for inclusion in future standards for EHRs based on the perspectives of people
living with chronic health conditions, carers, and professionals. More specifically,
the aims were as follows:
To develop from the perspective of people living with a chronic health condition standardized
chapter headings for EHRs which capture their main concerns of and perspectives on
daily life which are relevant for continuous routine care by using the ICF Rehabilitation
Set as a starting point.
To gain feedback from carers and professionals on chapter headings for EHRs identified
from the patients' perspective.
To examine whether existing assessment tools can capture the most important aspects
of functioning identified in the chapter headings for EHRs.
Methods
A multistage, iterative development process was established including a multimethod
design. [Fig. 1 ] provides an overview of the design. We opted for iterative rounds to allow first
for an open and in-depth discussion in a smaller group (first stage: patient workshop)
before gaining feedback from a broader group of patients and carers in a more structured
way (second stage: online survey). Since patient and professional bodies are highly
relevant stakeholders in the implementation of standards for care, we also wanted
to gain their perspective on the proposed chapter headings for EHRs (third stage:
online consultation). This three-stage process resulted in a final proposal of standardized
chapter headings for EHRs. Finally, a fourth stage examined the extent to which existing
assessment tools could capture appropriate information to be recorded under the identified
headings.
Fig. 1 Overview of study design.
Patient's Workshop
First we invited people living with chronic health conditions to a workshop held in
London, UK. We applied convenience sampling by contacting people from the Royal College
of Physicians (RCP) Patient Carer Network, an established network of around 65 patients,
carers, and members of the public from across the United Kingdom with a wide range
of backgrounds,[31 ] ages, and varying long-term conditions. All 65 members of the network were invited
to attend the workshop. The workshop was structured in two parts, each part lasting
approximately 45 minutes, and moderated by two members of the research team (D.W.,
P.R.). D.W. moderated the discussions and was responsible for the overall coordination
of the workshop. P.R. provided content input and guided the discussions. A third member
(B.P.) observed the workshop and took notes of the plenary discussions following the
small group discussions. The structure and content of the workshop was prepared by
these three authors and revised based on the feedback of the whole research team.
All three authors had experience in conducting and moderating group discussions (e.g.,
focus groups, workshops, expert panels). P.R. provided a short background to the study
and then introduced the different parts. In the first part, participants were divided
into smaller groups and a discussion was held to discuss their priorities, concerns,
and perspectives regarding daily life with chronic health condition. The actual questions
are shown in [Table 2 ]. Comments were then fed back to the full group. In the second part, participants
were asked to review and comment on the functioning aspects proposed in the ICF Rehabilitation
Set again in small groups, and to discuss how well these matched with their earlier
thoughts. The ICF Rehabilitation Set was chosen as it is supposed to contain the most
relevant aspects to describe functioning in people with various health conditions
along the continuum of care.[24 ] The smaller groups were asked to organize themselves with the only request to nominate
one person who reports back to the full group. Thematic content analysis was conducted
from the detailed notes taken during the workshop and a first draft of proposed chapter
headings for EHRs was developed.
Table 2
Questions asked at each stage of the development process
Stage 1: Patient's workshop
Part 1:
What kind of issues would you like to see recorded in your care records?
What should people know about your abilities/disabilities to tailor your care?
What information would you like to be able to record?
Part 2:
Do the ICF categories cover the domains that matter to you?
Based on your previous discussion, are there any domains missing?
Are there any unnecessary domains?
Is the wording of the headings and descriptions understandable?
Stage 2: Online survey of both patients and carers
Does the heading make sense to you?
Is the description easy to understand?
Does the heading as well as its description cover issues relevant to you?
Please suggest any additional headings, identify duplication or redundancy.
Do you have any general comments?
Abbreviation: ICF, International Classification of Functioning, Disability, and Health.
Online Survey of Both Patients and Carers
To overcome a potential selection bias introduced through the convenience sampling
in the first stage, for example, only people who are already in the RCP Patient Carer
Network were invited to the workshop, we conducted a national online survey in the
second stage. We recruited potential participants via existing contacts and networks
of Health Informatics Unit at the Royal College of Physicians, including the RCP Patient
Carer Network, as well as via social media advertising, patient organizations, and
contacts of the research team. Patients and carers were invited to complete an online
survey via SurveyMonkey which was open for 5 weeks (December 2014 to January 2015).
Participants were asked basic sociodemographic questions and to indicate a health
condition; only survey responses of persons indicating a health condition were included
in the further analysis. Furthermore, they were provided with the first proposal of
standardized chapter headings for EHRs as identified in the first stage and asked
structured questions to provide feedback on the wording, ease of understanding, and
relevance of the proposed headings to them. Each heading was listed and participants
were asked to respond to the questions detailed in [Table 2 ]. Participants were given three response choices: Yes; No; Don't know. Blank answers
were treated as missing values. Descriptive statistics were used to analyze the results
of the structured questions, and thematic content analysis for the open questions.
Descriptive statistics were calculated in Microsoft Excel, and thematic content analysis
was conducted in Microsoft Word. A new item was added if the thematic content analysis
revealed a theme based on the feedback of a considerable number of participants. If
concepts only appeared sporadically, they were not merged into a theme and, subsequently,
did also not translate into an item. Based on the findings of the online survey, a
second version of the proposed headings was drafted first by two researchers and then
finalized based on the feedback of the whole research team.
Online Consultation with Relevant Patient and Professional Bodies
The revised chapter headings for EHRs, based on the online survey, were sent out in
the third and final stage to relevant patients and professional bodies to gather final
feedback on the proposed list. Forty-three relevant patients and professional body
stakeholder groups were identified from the RCP Health Informatics Unit communications
network. These bodies represented doctors, nurses, health and social care professionals,
and patient groups from across the United Kingdom. They received the list of proposed
chapter headings for EHRs and their descriptions via e-mail and were asked to provide
feedback on the comprehensiveness of the proposed headings, their suitability, and
value for clinical practice based on open-ended questions. As in the second stage,
thematic content analysis was applied for analysis. The feedback was reviewed by the
entire multidisciplinary research team and incorporated into the final revision of
the headings. The final list of chapter headings for EHRs was then mapped back to
the ICF using the latest version of the ICF Linking Rules,[32 ] a method developed to link systematically existing information to the ICF.
Linking of Existing Data Collection Tools to the Identified Chapter Headings for EHRs
Chapter headings for EHRs specify the high-level information domains for patient records
but do not specify where that information should be drawn from or how it should be
expressed. We investigated two assessment tools, a patient-reported outcome measure
and a clinician-administered assessment instrument, to assess their suitability. We
selected both to demonstrate potential methods for populating the headings based on
existing models for data collection. As a patient-reported outcome measure, we selected
WHODAS 2.0, which is the second version of the WHO Disability Assessment Schedule.
It is a generic instrument to be used in both general and clinical populations, and
is valid across age groups and cultures.[33 ]
[34 ] As a clinically administered assessment instrument, we opted for interRAI, which
is a widely used assessment system for monitoring functioning in people with chronic
health conditions over time and across care settings. The interRAI assessment system
consists of item sets for use across populations and care settings, but also specific
item sets tailored toward particular clinical populations and care settings to generate
data for use in care planning and resource allocation, reimbursement, as well as quality
improvement and evaluation.[35 ] Both WHODAS 2.0 and interRAI have been shown in previous research to capture relevant
aspects covered in the ICF.[33 ]
[36 ] The ICF Linking Rules,[32 ] as in the third stage, were applied to identify items that could assist in the collection
of relevant information for the identified chapter headings for EHRs. For WHODAS 2.0,
all items were linked initially to the ICF. Subsequently, items were linked to the
identified chapter headings for EHRs through the ICF categories specified in the third
stage. Since interRAI is an assessment system, the research team consulted with interRAI
experts to identify parts of the assessment system that match broadly with the domains
identified as being important to people with chronic health conditions. Subsequently,
the identified parts of the assessment system were linked to the ICF and checked for
concordance with the chapter headings for EHRs using the same method applied for WHODAS
2.0 items. This procedure was considered appropriate by the entire research team as
the aim was to identify whether existing tools, WHODAS 2.0 and interRAI, allow operationalization
of the identified chapter headings for EHRs and not whether these existing tools can
be linked to the ICF in general.
Results
This study identified 16 chapter headings for EHRs that most completely capture the
breadth of issues highlighted as being important by people living with a chronic health
condition. An overview of the results is presented in [Fig. 2 ].
Fig. 2 Overview of results.
Patient Workshop
Eight people (five women, three men) with varying health conditions (including diabetes,
endocrine disorders, kidney disorders, arthritis, thyroid disorders, and ulcerative
colitis) participated in this workshop. The key themes that participants named as
being important in their care included issues related to organizational aspects related
to their care, such as being able to access and contribute to their health record
and being involved in shared decision-making processes regarding their health and
treatment. With respect to what information should be captured systematically and
continuously, personal aspects (i.e., family context, personal care priorities and
preferences, and communication needs), health condition–specific aspects (i.e., symptoms
most rated as important by patients), and treatment-related aspects (i.e., information
about adverse effects of medication and interactions among various drugs) were named.
While all of the elements of the ICF Rehabilitation Set were considered as relevant,
participants recommended the grouping of some of the categories together into larger
information domains. For example, the ICF categories related to walking, moving around,
moving around using equipment, and using transportation from the ICF Chapter d4 Mobility
were all subsumed under the heading “Mobility and movement.” They argued that mobility
and movement is relevant to most patients with chronic conditions, while more detailed
ICF categories separated functioning aspects into a level of detail not relevant across
various health conditions. Additional domains were identified, mainly related to the
care process. Examples of the additional domains include “Understanding of health
issues,” “Treatment,” and “Care priorities and goals.” Based on the themes identified
by participants of this workshop, 11 chapter headings for EHRs were included in the
first draft as outlined in columns 1 and 2 of [Table 3 ].
Table 3
Development of standardized chapter headings for EHRs across the three stages
1st proposal of standardized chapter headings for EHRs (N = 11)
2nd proposal of standardized chapter headings for EHRs (N = 15)
Final proposal of standardized chapter headings for EHRs (N = 16)
Heading
Descriptions
Heading
Descriptions
Heading
Descriptions
Emotions and mood
Refers to your mood and emotions that affect your daily life or your ability to deal
with other health issues. E.g., depression, worry, stress
Emotions and mood
Refers to your mood and emotions that affect your daily life or your ability to deal
with other health issues. E.g., depression, anxiety, worry, stress, anger, frustrations
Emotions, mood, and stress
Refers to mood and emotions that affect your daily life or ability to deal with other
health issues. E.g., depression, anxiety, worry, stress, anger, frustration
Energy and drive
Refers to your levels of motivation, drive, and energy affecting your daily life or
your ability to deal with other health issues. E.g., fatigue, restlessness
Motivation and drive
Refers to your levels of motivation and drive affecting your daily life or your ability
to deal with health issues
Motivation and drive
Refers to levels of motivation and drive that affect daily life or ability to deal
with health issues
Energy
Refers to your energy levels affecting your daily life or your ability to deal with
health issues
Energy
Refers to energy levels that affect daily life or ability to deal with health issues
Sleep
Refers to problems you have with going to sleep, disturbed sleep patterns, early wakening,
or daytime sleepiness affecting your daily life
Sleep
Refers to problems you have with going to sleep, disturbed sleep patterns, early wakening,
or daytime sleepiness affecting your daily life
Sleep
Refers to problems associated with going to sleep, disturbed sleep patterns, early
wakening, or daytime sleepiness that affect daily life
Memory and thoughts
Refers to problems with memory and/or thoughts (including confusion) affecting daily
life
Symptoms that affect daily living
Refers to symptoms or issues that affect your daily life. Also include changes over
time. E.g., pain, itchiness, cough
Symptoms that affect daily living
Refers to symptoms that you experience that affect your life. Include those with the
biggest impact on you. Includes physical and nonphysical symptoms
Symptoms that affect daily living
Refers to important or significant symptoms that affect daily life. E.g., itchiness,
cough, confusion
Pain
Refers to long-term or severe pain that affects your life. This could include a description
of the pain, how you manage it, and what it limits or stops you doing
Pain
Refers to long-term or severe pain affecting daily life
Self-care
Refers to problems you have caring for yourself which in turn affects your daily life.
E.g., washing yourself, using the toilet, eating ,and drinking. Include details of
any help or equipment you need or use
Self-care
Refers to problems you have caring for yourself that affect your daily life. E.g.,
washing yourself, using the toilet, eating, and drinking. Include details of any help
or equipment you need or use
Personal care
Refers to problems with caring for yourself that affect daily life. E.g., washing
yourself, using the toilet, eating, and drinking. Also covers help or equipment needed
for personal care
Mobility and movement
Refers to problems you have in moving around, both inside and outside which affect
your daily life. Include details of any help or equipment you need or use. E.g., moving
from a bed to a chair, walking, jogging
Mobility and movement
Refers to problems you have in moving around, both inside and outside that affect
your daily life. Include details of any help or equipment you need or use. Examples
include changing position, walking, the ability to drive or use public transport
Mobility and movement
Refers to problems with moving around, both inside and outside, that affect daily
life. Also covers help or equipment needed and the ability to drive or use public
transport
Social life
Refers to your ability to engage in your social life, with friends, relatives or colleagues
that impacts on your daily life. This can include intimate relationships with a partner
or spouse.
Social activities
Refers to your ability to engage in your social life, with friends, relatives or colleagues
that impacts on your daily life. This can include intimate relationships with a partner
or spouse.
Social activities
Refers to problems engaging socially with friends, relatives, or colleagues and romantic
or sexual relationships
Work and leisure
Refers to problems you encounter in undertaking paid or voluntary work and leisure
activities that affect your daily life. This includes housework, managing your finances,
shopping etc.
Work, education and leisure
Refers to problems you encounter in undertaking paid or voluntary work, participating
in education and leisure activities that affects your daily life. This includes housework,
managing your finances, shopping etc.
Work, learning, and leisure
Refers to problems with paid, voluntary, or house work and learning or leisure activities
that affect daily life
Finance
Refers to finance or money issues that affect daily life
Finance
Refers to finance or money issues that affect daily life
Medication or treatments
Refers to issues with medication, treatment, adverse effects, or special monitoring
that affect daily life
Medication or treatments
Refers to issues with medication, treatment, adverse effects, or special monitoring
that affect daily life
Understanding of your health issues and treatment
Refers to how well you understand your health problems, treatment, and care. Include
any particular concerns or questions you may have
Understanding of your health issues and treatment
Refers to how well you understand your health problems, treatment, and care. Include
any particular concerns or questions you may have
Understanding of your health issues and treatment
Refers to a person's understanding of health issues, treatment, and care. Also includes
extra help needed to better understand health issues plus potential concerns or questions
Individual needs
Refers to information you think is important that people involved in your care know.
E.g., accessibility or communication requirements
Your needs
Refers to information that a person may want to share with people involved in their
care and could include communication or accessibility requirements
Your needs
Refers to information that a person may want to share with people involved in their
care and could include communication or accessibility requirements
Care priorities and goals
Refers to your current and future care priorities and goals. Include any information
relevant to your care plan
Care priorities and goals
Refers to your current and future care priorities and goals. Include any information
relevant to your care plan
Care priorities and goals
Refers to a person's current and future care priorities and goals and could include
details of a personalized care plan
Abbreviation: EHRs, electronic health records.
Online Survey of Both Patients and Carers
The survey was completed by 250 participants with varying health conditions, including
diseases of the respiratory system (i.e., asthma, chronic obstructive pulmonary disease,
cystic fibrosis), diseases of the circulatory system, endocrine diseases (i.e., diabetes),
diseases of organ systems (i.e., liver disease, kidney disease), musculoskeletal disorders
(i.e., arthritis), neurological diseases (i.e., multiple sclerosis, Huntington's disease,
Parkinson's disease, stroke), neurodevelopmental disorders (i.e., learning disabilities),
mental disorders, as well as other conditions (i.e., HIV, skin disorders, and sensory
impairments). More than half of the participants (57%) were female; the median age
was 49 years (range: 1–95). A small group (7%) was reported to be from a minority
ethnic group. Most participants rated the impact of their chronic health condition
as moderate to high (92%). Out of the 250 participants, 138 (55%) were patients, 93
(37%) were carers, 19 (8%) considered themselves both patients and carers.
The analysis of the structured questions revealed that most headings were considered
as relevant and understandable by the majority of participants (more than 85%). Self-care,
mobility, individual needs, and care priorities were rated with lower relevancy by
participants, though still by more than 60%. Participants' responses to the relevancy
and understandability of the proposed chapter headings for EHRs are detailed in [Table 4 ].
Table 4
Summary of feedback from survey on relevancy and understandability of first draft
of chapter headings
This heading makes sense to me
This description covers issues relevant to me
Yes
No
Don't know
Yes
No
Don't know
Emotions and mood
93%
4%
3%
87%
10%
3%
Energy and drive
96%
3%
1%
88%
7%
5%
Sleep
95%
4%
1%
82%
17%
1%
Symptoms that affect daily living
92%
6%
2%
86%
10%
4%
Self-care
93%
6%
1%
64%
35%
1%
Mobility and movement
94%
5%
1%
67%
31%
2%
Social life
97%
2%
1%
82%
16%
2%
Work and leisure
96%
3%
1%
79%
19%
2%
Understanding of your health issues and treatment
97%
2%
1%
92%
6%
2%
Individual needs
88%
8%
3%
75%
21%
4%
Care priorities and goals
87%
8%
5%
74%
16%
10%
In addition to the listed chapter headings for EHRs, participants frequently emphasized
in response to the open question some duplication or redundancy issues and suggested
additional headings. For instance, energy and drive should be separated as issues
related to energy are more physical in nature, and to drive more emotional. Another
recommendation was to add Pain as a distinct chapter heading not subsumed under Symptoms that affect daily living. Driving and ability to use public transport were named as being important aspects
to be added. With respect to participation in major life areas, participants felt
that education as well as finances need to be added. Aspects related to medication
and treatment, including what drug to be taken when as well as their adverse effects
and interactions with other medications, were also commonly cited by patients. The
chapter heading on “needs” was considered as highly relevant and further revisions
of the description were suggested so that it reflects better the need for capturing
personal information to provide individualized care. Based on this feedback, a revised
list of 15 chapter headings for EHRs was drafted as outlined in columns 3 and 4 of
[Table 3 ].
Online Consultation with Relevant Patient and Professional Bodies
Representatives of 18 of the 43 invited patient and professional bodies provided feedback
via e-mail on the refined chapter headings for EHRs.[a ] The overall feedback was that having standards for chapter headings for EHRs in
health records is very important. The addition of headings covering cognitive and
memory functions was suggested along with some minor language adjustments to clarify
the meaning of some headings. Additionally feedback identified complementary efforts
by other groups (in particular rehabilitation medicine and occupational therapy) and
highlighted the importance of alignment with other efforts, particularly during future
implementation and use of the proposed headings. The final list of chapter headings
for EHRs is presented in the fifth and sixth columns of [Table 3 ]. The linking of the final chapter headings for EHRs to the ICF is displayed in [Table 5 ]. ICF categories which are not part of the ICF Rehabilitation Set—b144 Memory functions,
b160 Thought functions, and d860-d879 Economic life—are contained in the final chapter
headings for EHRs. Four ICF categories from the body functions—b620 Urination functions,
b640 Sexual functions, b710 Mobility of joint functions, and b730 Muscle power functions—were
not referenced in any of the consultation stages and do not appear as specific proposed
headings. However, the chapter heading “Symptoms that affect your life” is from an
ICF linking perspective nonspecific and may capture these aspects. Aspects of d5 Self
Care are summarized in the chapter headings for EHRs on this general level (which
is equivalent to the chapter level of the ICF) while they are specified on a more
detailed classification level in the ICF Rehabilitation Set (including d510 Washing
oneself, d520 Caring for body parts, d530 Toileting, d540 Dressing, d550 Eating, d570
Looking after one's health). Similarly, aspects related to mobility are summarized
on chapter level (d4) and listed in greater detail in the ICF Rehabilitation Set (including
d410 Changing basic body positions, d415 Maintaining a body position, d420 Transferring
oneself, d450 Walking, d455 Moving around, d465 Moving around using equipment, d470
Using transportation).
Table 5
Final proposal of standardized chapter headings for EHRs and their alignment with
the ICF
Chapter heading
ICF category[a ]
Emotions, mood, and stress
b152 Emotional functions
Motivation and drive
b130 Energy and drive functions
Energy
b130 Energy and drive functions
b455 Exercise tolerance functions
Sleep
b134 Sleep functions
Memory and thoughts
b144 Memory functions
b160 Thought functions
Symptoms that affect your life
Not definable
Pain
b280 Sensation of pain
Personal care
d230 Carrying out daily routine
d5 Self-care
Mobility and movement
d4 Mobility
Social activities
d7 Interpersonal interactions and relationships
Work, learning, and leisure
d810-d839 Education
d840-d859 Employment
d920 Recreation and leisure
Finance
d860-d879 Economic life
Medication or treatments
d570 Looking after one's health
Understanding of your health issues and treatment
Not definable
Your needs
Care priorities and goals
Abbreviations: EHRs, electronic health records; ICF, International Classification
of Functioning, Disability, and Health.
a Only the ICF codes of the linking of the main concepts are listed.
Linking of Existing Data Collection Tools to the Identified Chapter Headings for EHRs
The linking of the WHODAS 2.0 revealed concordance of 30 out of 36 items with the
chapter headings for EHRs. The interRAI Home Care, Long-Term Care Facilities, and
Community Mental Health assessment were identified as relevant for the present study.
When used jointly, the identified interRAI assessments capture all of the proposed
chapter headings for EHRs except Finance, Understanding of your health issues and treatment, Your needs, and Care priorities and goals . The WHODAS 2.0 contains an item linked to Finance and Your needs , respectively. No item could be identified to operationalize Understanding of your health issues and treatment, and Care priorities and goals ; however, information related to these information domains might be partly derived
from information documented under other chapter headings for EHRs, partly from other
information sources, and partly from the patient–provider interaction. The WHODAS
2.0 captures less domains that refer to body functions which reflects the fact that
it is an outcome measure intended to assess aspects related to day-to-day functioning
across a range of activity and participation domains rather than an assessment of
impairment or symptoms.[34 ] A comprehensive overview of the linking results is provided in [Table 6 ].
Table 6
Illustration of operationalization of chapter headings based on existing data collection
tools
Chapter heading
WHODAS 2.0
interRAI
Item
Response format
interRAI item
Response format
interRAI home care
interRAI long-term care facilities
interRAI community mental health
Emotions, mood, and stress
D6.5 How much have you been emotionally affected by your health condition
None
Mild
Moderate
Severe
Very severe
Indicators for possible depressed, anxious, or sad mood
0 Not present to 3 Exhibited daily in last 3 days
✓
✓
Mental state indicators (mood disturbance, anxiety, psychosis, negative symptoms,
other indicators)
0 Not present to 3 Exhibited daily in last 3 days
✓
Self-reported mood
0 Not in last 3 days to 3 Daily in the last 3 days; 8 Person could not (would not)
respond
✓
✓
✓
Motivation and drive
Acute change in mental status from person's usual functioning
0 No, 1 Yes
✓
Energy
Fatigue
None to Unable to commence any normal day-to-day activity
✓
✓
✓
Sleep
Sleep problems
Coded for presence in last 3 days from 0 Not present to 4 Exhibited daily in last
3 days
✓
✓
Time asleep during day
0 Awake all or most of the time to 4 Largely asleep or unresponsive
✓
Memory and thoughts
D1.2 Remembering to do important things?
None
Mild
Moderate
Severe
Very severe
Cognitive skills for daily decision making
0 Independent to 4 Severely impaired; 5 No discernable consciousness, coma
✓
✓
✓
Symptoms that affect your life
D6.4 How much time did you spend on your health condition, or its consequences?
None
Mild
Moderate
Severe
Very severe
Bladder continence
0 Continent to 5 Incontinent; 8 Did not occur
✓
✓
✓
Pain
Frequency with which person complains or shows evidence of pain
Coded for presence in last 3 days from 0 Not present to 3 Exhibited daily in last
3 days
✓
✓
✓
Intensity of highest level of pain present
0 No pain to 4 Times when pain is horrible or excruciating
✓
✓
✓
Consistency of pain
0 No pain to 3 Constant
✓
✓
✓
Breakthrough pain
0 No, 1 Yes
✓
✓
Pain control
0 No pain issue to 4 Therapeutic regimen followed, but pain control not adequate;
5 No therapeutic regimen being followed for pain; pain not adequately controlled
✓
✓
✓
Personal care
D3.1 Washing your whole body?
D3.2. Getting dressed?
D3.3 Eating?
D3.4 Staying by yourself for a few days?
None
Mild
Moderate
Severe
Very severe
Bathing
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Personal hygiene
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
✓
Toilet use
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
✓
Dressing upper body
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Dressing lower body
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Eating
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
✓
Mobility and movement
D2.1 Standing for long periods such as 30 min?
D2.2 Standing up from sitting down?
D2.3 Moving around inside your home?
D2.4 Getting out of your home?
D2.5 Walking a long distance such as a kilometer (or equivalent)?
None
Mild
Moderate
Severe
Very severe
Transfer toilet
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
✓
Bed mobility
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Walking
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Stairs
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
Locomotion
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
✓
Transportation
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Social activities
D4.1 Dealing with people you do not know?
D4.2 Maintaining a friendship?
D4.3 Getting along with people who are close to you?
D4.4 Making new friends?
D4.5 Sexual activities?
None
Mild
Moderate
Severe
Very severe
Unsettled relationships
0 No, 1 Yes
✓
✓
Strengths—Strong and supportive relationship with family
0 No, 1 Yes
✓
✓
Social relationships
0 Never, 1 More than 30 days ago, to 4 In last 3 days; 8 Unable to determine
✓
✓
Sexual activity—Reports persistent difficulty
0 No, 1 Yes
✓
Work, learning and leisure
D5.1 Taking care of your household responsibilities?
D5.2 Doing most important household tasks well?
D5.3 Getting all the household work done that you need to do?
D5.4 Getting your household work done as quickly as needed?
D5.5 Your day-to-day work/school?
D5.6 Doing your most important work/school tasks well?
D5.7 Getting all the work done that you need to do?
D5.8 Getting your work done as quickly as needed?
D6.1 How much of a problem did you have in joining in community activities (e.g.,
festivities, religious, or other activities) in the same way as anyone else can?
D6.4 How much of a problem did you have living with dignity because of the attitudes
and actions of others?
D6.8 How much of a problem did you have in doing things by yourself for relaxation
or pleasure?
None
Mild
Moderate
Severe
Very severe
Ordinary housework
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Employment status
1 Employed, 2 Unemployed—seeking employment, 3 Unemployed—not seeking employment
✓
Employment arrangements (exclude volunteering)
1 Competitive, 2 Supportive, 3 Vocational, 4 NA
✓
Finance
D6.6 How much has your health been a drain on the financial resources of you or your
family?
None
Mild
Moderate
Severe
Very severe
Medication or treatments
Managing medications
0 Independent to 6 Total dependence; 8 Activity did not occur
✓
✓
Understanding of your health issues and treatment
Your needs
D6.2 How much of a problem did you have because of barriers or hindrances in the world
around you?
None
Mild
Moderate
Severe
Very severe
Care priorities and goals
Discussion
This study provides a proposal for 16 chapter headings for EHRs, suitable for inclusion
in future standards for EHRs, which will allow the perspectives of people living with
chronic health conditions and their carers to be recorded. In their simplest form,
these headings may act as an aide memoire during clinical care, serve as structure,
and organization for free text encounter notes, and thereby also serve as a checklist
and reminder of issues that should be raised with patients, documented, and incorporated
into care planning. This kind of impact on clinical documentation practice has already
been seen for headings and templates that reflect good practice guidelines.[37 ]
[38 ]
[39 ] Providing patients with a personal health records linked to provider EHRs significantly
improves perception of patient-centeredness.[40 ] Harnessing new technologies and having information on what matters to patients consistently
documented in a structured way within EHR systems alongside their core clinical information
allows the creation of truly patient-focused records.
EHRs, including their content and management (e.g., access by whom and to what information),
need to be developed in a responsive and responsible manner.[41 ]
[42 ] Both from the discussions in the workshop and general comments in the survey, there
was feedback from patients that current clinical practice and use of patient-focused
clinical information is variable, is frequently omitted, and clinical care is often
very medically focused. The proposed chapter headings encompass bodily (e.g., symptoms),
mental (e.g., emotions and mood), and physical (e.g., mobility and movement) aspects,
as well as aspects of daily (e.g., self-care) and social life (e.g., work and leisure),
and personal factors (e.g., individual needs). For most of the headings, more than
80% of survey participants stated that it covers issues relevant to them. Only self-care
and mobility and movement reached 64 and 67% of agreement, respectively, followed
by individual needs, care priorities and goals, and work and leisure with 74, 75,
and 79%, respectively. These findings may reflect the heterogeneity of the participants;
for example, depending on the health condition, not all may experience a limitation
in certain domains and thus consider it less relevant for them. Alternatively, these
domains may reflect issues not yet asked routinely in clinical consultations and thus
something that not everyone expects to be discussed with their clinician.
During the final phase of consultation with professional bodies, the need for these
chapter headings for EHRs was widely supported, but concerns regarding their practical
use were identified. The first issue concerned the lack of time available in clinical
encounters to enquire about these issues and then record the information. We believe
that future information systems, patient access to shared records, and growth in handheld
devices as well as apps all enable a future where patients and carers may be supported
in recording and accessing this information themselves. Additionally, it is likely
that this information will be built up over time, as part of chronic health management,
thus dispersing the time requirement over multiple encounters. The second issue identified
was that clinicians were already providing personalized care and that consultation
and communication skills taught to professional groups focused on this type of holistic
care. While we accept this is the case in many areas, feedback from patients highlighted
that this was by no means universal.
Implementation of innovative systems, such as EHRs, builds upon various determinants,
including the innovation itself, the adopting organization, the available infrastructure,
as well as influences from the external environment including regulatory bodies.[30 ] With regard to the external environment, the need for interoperable health records
based on international terminological standards, such as the ICF, has been emphasized
not only by WHO but also by the International Organization for Standardization (ISO).[43 ] Ensuring that these standards are aligned with international agreed-upon conceptual
and terminological standards, such as the ICF, will contribute to the interoperability
of EHRs in the future and their utilization to support shared clinical decision making
in the clinical encounter.[44 ] The ICF as one of WHO's reference classifications has been proposed for this purpose
and served as the starting point for this project. The comprehensive understanding
of individuals' health reflected in the ICF underpins person-centered care which in
turn is defined as a quality characteristic for health care services.[45 ] It is important to highlight that the chapter headings presented here reflect only
concepts related to the Activity and Participation component in the ICF. The environment
plays a significant role in describing what a person actually can do or does.
It was not the remit of this project to determine how information is gathered, recorded,
or used. We have demonstrated with the WHODAS 2.0 and interRAI assessments that suitable
assessment tools exist, but further work needs to be done to develop guidance not
only on how to implement but also how to operationalize the identified chapter headings
for EHRs. There is a wide range of tools available, including generic and health condition–specific
tools, setting specific tools (e.g., for acute and post-acute, rehabilitation, and
community settings), as well as tools with different administration modes (including
self-report, clinician administered, and clinical tests). Many tools have been linked
already to the ICF (https://www.icf-research-branch.org/ ). In determining how information is gathered, it needs to be also defined how information
on the influence of the environmental is documented.
Once record systems are available which function interoperable, analytical tools can
be integrated into routine health care. For instance, interventions can be allocated
tailored to the specific health and related issues of a person in need of services
through risk stratification and predictive-modeling algorithms.[46 ] Work and communication flows can be easily coordinated based on aspects most relevant
to patients, which is of great value particularly where people receive care from various
professionals across many settings. Additionally, compliance with organizational processes
and their outcomes can be audited.[47 ] Changes in how we interact with patients including information gathering before
traditional consultations,[48 ] embracing new tools for communication with patients, and allowing patients greater
input to their clinical records further add to the richness of clinical information
available.[49 ] Nevertheless, future work is required to support the implementation of the headings
within electronic records. The proposed chapter headings need to be integrated into
an information model necessary to enable the technical architecture that will support
standardized messaging and sharing of information alongside integration with existing
records. Such work is ideally done within an open-source environment to facilitate
widespread adoption and use of the headings.
The methods applied in this study have strengths but also bear some limitations. Our
consultation and engagement with patients and carers, while wide reaching, could not
capture all possible opinions and experiences. We opted for a workshop design with
a convenience sample which restricted the number of participants. The subsequent survey
allowed us to reach out more widely. Since we opted for a social media communication
strategy in addition to sending the survey invitation to existing networks, it is
not possible to estimate the exact response rate. With responses from people related
to neurological, neurodevelopmental, and musculoskeletal health condition groups as
well as diseases related to the circulatory, respiratory, and endocrine system, mental
disorders, and other health conditions, we were able to reach out to a heterogeneous
group. While the results indicate overlap with adult and pediatric care, the suitability
of the identified chapter headings for EHRs for pediatric care requires much more
detailed work and was beyond the scope of our project. We also note that our methods
for engagement favored a patient and carer group with access to e-mail and social
media. Future work will need to consider how to engage with hard to reach groups not
included here, including ethnic minorities which were underrepresented in this study.
This project was conducted by a research team with an expertise in health informatics,
including EHRs and interoperability, international classifications, in particular
the ICF, and clinical management, including the utility of standardized tools for
enhancing clinical decision making. The team consisted of a working and steering group.
The working group consulted on a monthly basis with the steering group to review the
progress and gain feedback on the results. This mode of operation allowed building
upon the interdisciplinary and wide expertise of the group, yet remaining reflective
on the scope of the project and its methodological quality.
Conclusion
The patient perspective headings that we propose provide a high level structure for
the standardized recording, use, and sharing of information rated as important by
patients with long-term health problems. These headings build upon the perspective
of people living with chronic health conditions, carers, and professionals. We have
exemplified with two existing data collection tools that they capture relevant aspects
of functioning to be documented according to the identified chapter headings for EHRs.
Further challenges exist on how to implement these headings into EHR and to integrate
the proposed standard into a technical architecture necessary for the standardized
messaging and sharing of information. It is essential that patient and professional
engagement is part of this ongoing development.
Clinical Relevance Statement
Clinical Relevance Statement
The headings identified in this study represent some of the vital elements required
for inclusion in person-centered clinical models. The results suggest that to meet
the needs of patients, carers, and clinical professionals, the development of semantically
interoperable, structured, EHRs must include these elements.
Multiple Choice Question
When implementing standardized headings for electronic health records, which of the
following aspects have been neglected in records built upon the traditional medical
model but must receive closer attention in records developed for people living with
a chronic health condition?
Surgical interventions
Medical signs and symptoms
Functional, social, and financial status
Pharmaceutical treatments
Correct Answer: The corect answer is option c, functional, social and financial status. The traditional
medical model focuses on bio-medical issues. In contrast, the bio-psycho-social model
as underpinning the ICF stresses the need to give attention also to aspects related
to functional, social, and financial status.
