Appl Clin Inform 2018; 09(02): 348-365
DOI: 10.1055/s-0038-1649488
Research Article
Schattauer GmbH Stuttgart

Documenting Routinely What Matters to People: Standardized Headings for Health Records of Patients with Chronic Health Conditions

Birgit Prodinger
1  Faculty of Applied Health and Social Sciences, University of Applied Sciences Rosenheim, Rosenheim, Germany
2  Human Functioning Unit, Swiss Paraplegic Research, Nottwil, Switzerland
3  Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland
4  ICF Research Branch, a partner of the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI), Nottwil, Switzerland
Paul Rastall
5  Health Informatics Unit, Royal College of Physicians, London, United Kingdom
Dipak Kalra
6  The EuroRecInstitute, Brussels, Belgium
7  Centre for Health Informatics and Multiprofessional Education, University College London, London, United Kingdom
Darren Wooldridge
5  Health Informatics Unit, Royal College of Physicians, London, United Kingdom
Iain Carpenter
5  Health Informatics Unit, Royal College of Physicians, London, United Kingdom
› Author Affiliations
Funding This study was partly funded by the European Commission (Seventh Framework Program; Grant Agreement no. 288408).
Further Information

Publication History

18 August 2018

29 March 2018

Publication Date:
23 May 2018 (online)


Objective Specifying the content in electronic health records (EHRs) through standardized headings based on international reference classifications will facilitate their semantic interoperability. The objective of this study was to specify potential chapter headings for EHRs aligned with the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) based on the perspectives of people living with chronic health conditions, carers, and professionals.

Methods A multistage process was established including (1) a patient workshop, (2) an online survey of both patients and carers, and (3) an online consultation with patient and professional bodies. The ICF served as a starting point. Based on the first stage, a first draft of the headings was developed and further refined based on the feedback at each stage. We examined in a fourth step whether items from existing assessment tools support the operationalization of the identified headings. Therefore, we used the WHO Disability Assessment Schedule 2.0 (WHODAS2.0), a patient-reported instrument, and interRAI, a clinician-administered instrument.

Results The first workshop was attended by eight people, the survey was completed by 250 persons, and the online consultation received detailed feedback by 18 professional bodies. This study resulted in 16 potential chapter headings for EHRs which capture aspects related to the body, such as emotions, motivation, sleep, and memory or thoughts, to being involved in social life, such as mobility, social activities, and finances, as well as to the care process, such as understanding of health issues and treatment or care priorities and goals. When using the WHODAS2.0 and interRAI together, they capture all except one of the proposed headings.

Conclusion The identified headings provide a high level structure for the standardized recording, use, and sharing of information. Once implemented, these headings have the potential to facilitate the delivery of personalized care planning for patients with long-term health problems.

Protection of Human and Animal Subjects

Patients, carers, and health care staff participated in this project as members of the public who volunteered to take part when notified of the study by service user and carer networks, and patient and professional bodies. Ethical approval for the study was therefore not required.