Operationalizing and digitizing person-centered daily functioning: a case for functionomics.

An ever-increasing amount of data on a person's daily functioning is being collected, which holds information to revolutionize person-centered healthcare. However, the full potential of data on daily functioning cannot yet be exploited as it is mostly stored in an unstructured and inaccessible manner. The integration of these data, and thereby expedited knowledge discovery, is possible by the introduction of functionomics as a complementary 'omics' initiative, embracing the advances in data science. Functionomics is the study of high-throughput data on a person's daily functioning, that can be operationalized with the International Classification of Functioning, Disability and Health (ICF).A prerequisite for making functionomics operational are the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. This paper illustrates a step by step application of the FAIR principles for making functionomics data machine readable and accessible, under strictly certified conditions, in a practical example. Establishing more FAIR functionomics data repositories, analyzed using a federated data infrastructure, enables new knowledge generation to improve health and person-centered healthcare. Together, as one allied health and healthcare research community, we need to consider to take up the here proposed methods.

Feasibility of Using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) as a Framework for Aquatic Activities: A Scoping Review.

(1) Background: In recent years, reviewing studies of aquatic activities for children with developmental delays has been a complex task due to the multitude of indices and professional languages. (2) Aim: To determine if the ICF-CY framework can be used as the unifying language in AA studies of children with DD. (3) Methods: Part One-A systematic review of selected studies focusing on goals that were found to be positive. These goals were linked to the ICF-CY categories. Part Two-Review of all studies using the ICF-CY's functioning components. (4) Results: Most of the positive goals were properly linked to ICF-CY and made it possible to review the 71 articles in a uniform language. (5) Conclusions: It is feasible to use the ICF framework as a universal structure and language.

The International Classification of Functioning, Disability and Health: Accuracy in Aquatic Activities Reports among Children with Developmental Delay.

Functioning, as described in the International Classification of Functioning, Disability and Health (ICF), increasingly raises interest in the world of child rehabilitation, especially because its application empowers patients and parents by not putting the emphasis on disability in terms of the medical diagnosis but on the person's lived experience and the level of functioning that might be achieved. However, this requires the correct understanding and application of the ICF framework to overcome differences in the often locally used models or the understanding of disability, including mental aspects. To evaluate the level of accurate use and understanding of the ICF, a survey was performed on studies of aquatic activities in children aged 6-12 with developmental delay published between the years 2010 and 2020. In the evaluation, 92 articles were found that matched the initial keywords (aquatic activities and children with developmental delay). Surprisingly, 81 articles were excluded for not referring to the ICF model at all. The evaluation was performed by methodological critical reading according to the ICF reporting criteria. The conclusion of this review is that despite the rising awareness in the field of AA, the ICF is used inaccurately and often not according to the model's biopsychosocial principles. For the ICF to become a guiding tool in evaluations and goal-setting for aquatic activity, the level of knowledge and understanding of the framework and language needs to be increased via curricula and studies on the effect of interventions on children with developmental delay. Even more so, the level of understanding on how to apply functioning among instructors and researchers working in the aquatic environment needs to be increased.

Assessment of functioning in Dutch primary care: Development study of a consultation tool for patients with chronic conditions and multimorbidity.

BACKGROUND: In primary care, a shift from a disease-oriented approach for patients with multimorbidity towards a more person-centred approach is needed. AIM: To transform a self-report questionnaire for patients with chronic conditions in primary care, the Primary Care Functioning Scale (PCFS), into an understandable, visually attractive and feasible consultation tool for patients and health care providers. The consultation tool consists of a web-based version of the PCFS, which is filled in by the patient and is processed to a feedback report that summarizes and visualizes the main findings. The feedback report can be discussed with the patient to facilitate a more person-centred conversation for patients with chronic conditions and multimorbidity in general practice. DESIGN AND SETTING: In this qualitative study, we developed the consultation tool by using design thinking in a participatory developmental process. METHODS: In the first phase, we constructed five different feedback report templates to summarize and display the results of a completed PCFS questionnaire in a series of two expert meetings with patients and general practitioners (GPs). In the second phase, we performed an exploratory qualitative interview study involving dyads of patients with chronic conditions and their practice nurses. In an iterative process, we explored their experiences with the consultation tool. RESULTS: Patients, as well as GPs, preferred a clear manner of presenting the results of the questionnaire in a feedback report. In 18 interviews with patients and practice nurses during three different interview rounds, we adjusted the feedback report and consultation tool based on the input from patients and practice nurses. After the final interview round, patients and practice nurses consented that the consultation tool was useful for having a more in-depth consultation about functioning and patients' preferences when integrated into the regularly scheduled consultations. CONCLUSION: We were able to develop an understandable and feasible consultation tool that is applicable in already existing chronic disease management programmes in general practice in the Netherlands. PATIENT OR PUBLIC CONTRIBUTION: To increase the understandability and feasibility of the consultation tool, we collaborated with end-users and actively involved patients, GPs and practice nurses in a participatory development process.

Reconsideration of the scheme of the international classification of functioning, disability and health: incentives from the Netherlands for a global debate.

PURPOSE: The ICF (International Classification of Functioning, Disability and Health) framework (used worldwide to describe 'functioning' and 'disability'), including the ICF scheme (visualization of functioning as result of interaction with health condition and contextual factors), needs reconsideration. The purpose of this article is to discuss alternative ICF schemes. METHOD: Reconsideration of ICF via literature review and discussions with 23 Dutch ICF experts. Twenty-six experts were invited to rank the three resulting alternative schemes. RESULTS: The literature review provided five themes: 1) societal developments; 2) health and research influences; 3) conceptualization of health; 4) models/frameworks of health and disability; and 5) ICF-criticism (e.g. position of 'health condition' at the top and role of 'contextual factors'). Experts concluded that the ICF scheme gives the impression that the medical perspective is dominant instead of the biopsychosocial perspective. Three alternative ICF schemes were ranked by 16 (62%) experts, resulting in one preferred scheme. CONCLUSIONS: There is a need for a new ICF scheme, better reflecting the ICF framework, for further (inter)national consideration. These Dutch schemes should be reviewed on a global scale, to develop a scheme that is more consistent with current and foreseen developments and changing ideas on health. Implications for Rehabilitation We propose policy makers on community, regional and (inter)national level to consider the use of the alternative schemes of the International Classification of Functioning, Disability and Health within their plans to promote functioning and health of their citizens and researchers and teachers to incorporate the alternative schemes into their research and education to emphasize the biopsychosocial paradigm. We propose to set up an international Delphi procedure involving citizens (including patients), experts in healthcare, occupational care, research, education and policy, and planning to get consensus on an alternative scheme of the International Classification of Functioning, Disability and Health. We recommend to discuss the alternatives for the present scheme of the International Classification of Functioning, Disability and Health in the present update and revision process within the World Health Organization as a part of the discussion on the future of the International Classification of Functioning, Disability and Health framework (including ontology, title and relation with the International Classification of Diseases). We recommend to revise the definition of personal factors and to draft a list of personal factors that can be used in policy making, clinical practice, research, and education and to put effort in the revision of the present list of environmental factors to make it more useful in, e.g., occupational health care.

From a Categorical Structure to a Concept Model: The International Classification of Health Interventions (ICHI).

The International Classification of Health Interventions (ICHI) alpha2 2016 Section 1 Interventions on Body Systems and Functions is based on ISO 1828 international standard named categorial Structure (CAST). This is not sufficient to represent the meaning of ICD9-CM Volume 3 labels. We propose to modify it by using the SNOMED CT concept model.

Does language ambiguity in clinical practice justify the introduction of standard terminology? An integrative review.

AIMS AND OBJECTIVES: To research the use of ambiguous language in written information concerning patients' functioning and to identify problems resulting from the use of ambiguous language in clinical practice. BACKGROUND: Many projects that aimed to introduce standard terminology concerning patients' functioning in clinical practice are unsuccessful because standard terminology is rarely used in clinical practice. These projects mainly aim to improve communication by reducing ambiguous language. Considering their lack of success, the validity of the argument that language ambiguity is used in clinical practice is questioned. DESIGN: An integrative literature review. METHODS: A systematic search of the MEDLINE (1950-2012) and CINAHL (1982-2012) databases was undertaken, including empirical and theoretical literature. The selected studies were critically appraised using a data assessment and extraction form. RESULTS: Seventeen of 767 papers were included in the review and synthesis. The use of ambiguous language in written information concerning patients' functioning was demonstrated. Problems resulting from the use of ambiguous language in clinical practice were not identified. However, several potential problems were suggested, including hindered clinical decision-making and limited research opportunities. CONCLUSION: The results of this review demonstrated the use of ambiguous language concerning patients' functioning, but health professionals in clinical practice did not experience this issue as a problem. This finding might explain why many projects aimed at introducing standard terminology concerning functioning in clinical practice to solve problems caused by ambiguous language are often unsuccessful. Language ambiguity alone is not a valid argument to justify the introduction of standard terminology. RELEVANCE TO CLINICAL PRACTICE: The introduction of standard terminology concerning patients' functioning will only be successful when clinical practice requires the aggregation and reuse of data from electronic patient records for different purposes, including multidisciplinary decision-making and research.

The applicability of the international classification of functioning, disability, and health to study lifestyle and quality of life of colorectal cancer survivors.

BACKGROUND: Well-designed studies on lifestyle and health-related quality of life (HRQoL) in colorectal cancer survivors based on a biopsychosocial instead of a traditional biomedical approach are warranted. We report on the applicability of the International Classification of Functioning, Disability, and Health (ICF) as useful biopsychosocial framework to improve research on how lifestyle influences colorectal cancer survivors' HRQoL, using the Energy for life after ColoRectal cancer (EnCoRe) study as an example. METHODS: The ICF was used to develop a conceptual model for studying lifestyle and colorectal cancer survivors' HRQoL, by identifying relevant factors from literature and mapping them within the ICF. Subsequently, this model was used for selection of measurement instruments and biomarkers. By linking meaningful concepts within selected measures to the ICF, we could assess the ICF coverage of our developed conceptual model. RESULTS: Within selected measures, 450 meaningful concepts were identified, of which 88% were linked to the ICF. The linking process resulted in 132 distinctive ICF categories assigned (38% within "Body Functions," 2% within "Body Structures," 46% within "Activities and Participation," and 14% within "Environmental Factors"). CONCLUSIONS: The selected EnCoRe study measures broadly cover ICF domains relevant to colorectal cancer survivors, stressing the relevance of using a biopsychosocial approach for studying this population's HRQoL. IMPACT: The developed conceptual model will guide data analyses and interpretation, and facilitate early transfer of results for development, evaluation, and implementation of personalized multidisciplinary lifestyle interventions. We recommend the ICF as an invaluable framework for improving the quality and scope of HRQoL studies.

An Ontology driven collaborative development for biomedical terminologies: from the French CCAM to the Australian ICHI coding system.

The CCAM French coding system of clinical procedures was developed between 1994 and 2004 using, in parallel, a traditional domain expert's consensus method on one hand, and advanced methodologies of ontology driven semantic representation and multilingual generation on the other hand. These advanced methodologies were applied under the framework of an European Union collaborative research project named GALEN and produced a new generation of biomedical terminology. Following the interest in several countries and in WHO, the GALEN network has tested the application of the ontology driven tools to the existing reduced Australian ICHI coding system for interventions presently under investigation by WHO to check its ability and appropriateness to become the reference international coding system for procedures. The initial results are presented and discussed in terms of feasibility and quality assurance for sharing and maintaining consistent medical knowledge and allowing diversity in linguistic expressiveness of end users.