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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
› Institutsangaben Funding This study was partly funded by the European Commission (Seventh Framework Program; Grant Agreement no. 288408).
Weitere Informationen

Publikationsverlauf

18. August 2018

29. März 2018

Publikationsdatum:
23. Mai 2018 (online)

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Abstract

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.

Keywords

patient's perspective - electronic health records - international classification of functioning - disability and health - semantic interoperability - chronic health conditions

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.


 

  • References

  • 1 WHO. Roadmap: Strengthening people-centred health services delivery in the WHO European Region. Copenhagen: WHO Regional Office for Europe; 2013
    Google Scholar
  • 2 Prince MJ, Wu F, Guo Y. , et al. The burden of disease in older people and implications for health policy and practice. Lancet 2015; 385 (9967): 549-562
    CrossrefPubMedGoogle Scholar
  • 3 Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 2014; 94 (03) 291-309
    CrossrefPubMedGoogle Scholar
  • 4 Holmström I, Röing M. The relation between patient-centeredness and patient empowerment: a discussion on concepts. Patient Educ Couns 2010; 79 (02) 167-172
    CrossrefPubMedGoogle Scholar
  • 5 Dixon-Woods M. Writing wrongs? An analysis of published discourses about the use of patient information leaflets. Soc Sci Med 2001; 52 (09) 1417-1432
    CrossrefPubMedGoogle Scholar
  • 6 Taylor P. From Patient Data to Medical Knowledge: The Principles and Practice of Health Informatics. Oxford: Blackwell Publishing Ltd; 2006
    Google Scholar
  • 7 Kalra D. Electronic health record standards. In: Haux R, Kulikowski C. , eds. IMIA Yearbook of Med Inform; 2006: S136-S144
    Google Scholar
  • 8 Westra BL, Delaney CW, Konicek D, Keenan G. Nursing standards to support the electronic health record. Nurs Outlook 2008; 56 (05) 258-266
    CrossrefPubMedGoogle Scholar
  • 9 Vreeman DJ, Richoz C. Possibilities and implications of using the ICF and other vocabulary standards in electronic health records. Physiother Res Int 2015; 20 (04) 210-219
    CrossrefPubMedGoogle Scholar
  • 10 Buyl R, Nyssen M. Structured electronic physiotherapy records. Int J Med Inform 2009; 78 (07) 473-481
    CrossrefPubMedGoogle Scholar
  • 11 Hayrinen K, Saranto K. The core data elements of electronic health record in Finland. In: Connecting Medical Informatics and Bio-Informatics: Proceedings of MIE2005—The XIXth International Congress of the European Federation for Medical Informatics. Amsterdam: IOS Press; 2005: 131-136
    Google Scholar
  • 12 Boonstra A, Broekhuis M. Barriers to the acceptance of electronic medical records by physicians from systematic review to taxonomy and interventions. BMC Health Serv Res 2010; 10: 231
    CrossrefPubMedGoogle Scholar
  • 13 Rosenbloom ST, Denny JC, Xu H, Lorenzi N, Stead WW, Johnson KB. Data from clinical notes: a perspective on the tension between structure and flexible documentation. J Am Med Inform Assoc 2011; 18 (02) 181-186
    CrossrefPubMedGoogle Scholar
  • 14 Weir CR, Staggers N, Gibson B, Doing-Harris K, Barrus R, Dunlea R. A qualitative evaluation of the crucial attributes of contextual information necessary in EHR design to support patient-centered medical home care. BMC Med Inform Decis Mak 2015; 15 (01) 30
    CrossrefPubMedGoogle Scholar
  • 15 Mirzaei M, Aspin C, Essue B. , et al. A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness. BMC Health Serv Res 2013; 13: 251
    CrossrefPubMedGoogle Scholar
  • 16 Blom JW, El Azzi M, Wopereis DM, Glynn L, Muth C, van Driel ML. Reporting of patient-centred outcomes in heart failure trials: are patient preferences being ignored?. Heart Fail Rev 2015; 20 (04) 385-392
    CrossrefPubMedGoogle Scholar
  • 17 WHO. International Classification of Functioning, Disability and Health. Geneva: World Health Organization (WHO); 2001
    Google Scholar
  • 18 Kostanjsek N. Use of The International Classification of Functioning, Disability and Health (ICF) as a conceptual framework and common language for disability statistics and health information systems. BMC Public Health 2011; 11 (Suppl. 04) S3
    PubMedGoogle Scholar
  • 19 Ustün TB, Chatterji S, Bickenbach J, Kostanjsek N, Schneider M. The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health. Disabil Rehabil 2003; 25 (11-12): 565-571
    CrossrefPubMedGoogle Scholar
  • 20 Maritz R, Aronksy D, Prodinger B. The Implementation of the International Classification of Functioning, Disability and Health (ICF) in Electronic Health Records. A systematic review. Appl Clin Inform 2017; 8 (03) 964-980
    Artikel in Thieme ConnectPubMedGoogle Scholar
  • 21 Stucki G, Kostanjsek N, Ustün B, Cieza A. ICF-based classification and measurement of functioning. Eur J Phys Rehabil Med 2008; 44 (03) 315-328
    PubMedGoogle Scholar
  • 22 Selb M, Escorpizo R, Kostanjsek N, Stucki G, Üstün B, Cieza A. A guide on how to develop an international classification of functioning, disability and health core set. Eur J Phys Rehabil Med 2015; 51 (01) 105-117
    PubMedGoogle Scholar
  • 23 Cieza A, Oberhauser C, Bickenbach J, Chatterji S, Stucki G. Towards a minimal generic set of domains of functioning and health. BMC Public Health 2014; 14: 218
    CrossrefPubMedGoogle Scholar
  • 24 Prodinger B, Cieza A, Oberhauser C. , et al. Toward the International Classification of Functioning, Disability and Health (ICF) Rehabilitation Set: A minimal generic set of domains for rehabilitation as a health strategy. Arch Phys Med Rehabil 2016; 97 (06) 875-884
    CrossrefPubMedGoogle Scholar
  • 25 Coenen M, Cieza A, Stamm TA, Amann E, Kollerits B, Stucki G. Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups. Arthritis Res Ther 2006; 8 (04) R84
    CrossrefPubMedGoogle Scholar
  • 26 Hieblinger R, Coenen M, Stucki G, Winkelmann A, Cieza A. Validation of the International Classification of Functioning, Disability and Health Core Set for chronic widespread pain from the perspective of fibromyalgia patients. Arthritis Res Ther 2009; 11 (03) R67
    CrossrefPubMedGoogle Scholar
  • 27 Kirchberger I, Coenen M, Hierl FX. , et al. Validation of the International Classification of Functioning, Disability and Health (ICF) core set for diabetes mellitus from the patient perspective using focus groups. Diabet Med 2009; 26 (07) 700-707
    CrossrefPubMedGoogle Scholar
  • 28 Greenhalgh T, Robert G, Macfarlane F, Bate P, Kyriakidou O. Diffusion of innovations in service organizations: systematic review and recommendations. Milbank Q 2004; 82 (04) 581-629
    CrossrefPubMedGoogle Scholar
  • 29 Grol R, Grimshaw J. From best evidence to best practice: effective implementation of change in patients' care. Lancet 2003; 362 (9391): 1225-1230
    CrossrefPubMedGoogle Scholar
  • 30 Bradley EH, Webster T, Baker D. , et al. Translating Research into Practice: Speeding the Adoption of Innovative Health Care Programs: Commonwealth Fund. New York, NY; 2004
    Google Scholar
  • 31 RCP. Patient and carer network. Royal College of Physicians; 2015 [cited September 15, 2015]; Available at: https://www.rcplondon.ac.uk/what-we-do/patient-involvement/patient-and-carer-network . Accessed September 15, 2015
    PubMedGoogle Scholar
  • 32 Cieza A, Fayed N, Bickenbach J, Prodinger B. Refinements of the ICF Linking Rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil 2016; DOI: 10.3109/09638288.2016.1145258.
    CrossrefPubMedGoogle Scholar
  • 33 Ustün TB, Chatterji S, Kostanjsek N. , et al; WHO/NIH Joint Project. Developing the World Health Organization Disability Assessment Schedule 2.0. Bull World Health Organ 2010; 88 (11) 815-823
    CrossrefPubMedGoogle Scholar
  • 34 WHO. WHO Disability Assessment Schedule 2.0 (WHODAS2.0). Geneva: World Health Organization; 2013 [cited September 3, 2013]; Available at: http://www.who.int/classifications/icf/whodasii/en/index.html . Accessed September 3, 2013
    PubMedGoogle Scholar
  • 35 Carpenter I, Hirdes JP. Using interRAI assessment systems to measure and maintain quality of long-term care. OECD/European Commission; 2013
    Google Scholar
  • 36 Berg K, Finne-Soveri H, Gray L. , et al. Relationship between interRAI HC and the ICF: opportunity for operationalizing the ICF. BMC Health Serv Res 2009; 9 (01) 47
    CrossrefPubMedGoogle Scholar
  • 37 Hersh WR. Medical informatics: improving health care through information. JAMA 2002; 288 (16) 1955-1958
    CrossrefPubMedGoogle Scholar
  • 38 Black AD, Car J, Pagliari C. , et al. The impact of eHealth on the quality and safety of health care: a systematic overview. PLoS Med 2011; 8 (01) e1000387
    CrossrefPubMedGoogle Scholar
  • 39 Kalra D, Fernando B, Morrison Z, Sheikh A. A review of the empirical evidence of the value of structuring and coding of clinical information within electronic health records for direct patient care. Inform Prim Care 2012; 20 (03) 171-180
    PubMedGoogle Scholar
  • 40 Nagykaldi Z, Aspy CB, Chou A, Mold JW. Impact of a Wellness Portal on the delivery of patient-centered preventive care. J Am Board Fam Med 2012; 25 (02) 158-167
    CrossrefPubMedGoogle Scholar
  • 41 Wiljer D, Urowitz S, Apatu E. , et al; Canadian Committee for Patient Accessible Health Records. Patient accessible electronic health records: exploring recommendations for successful implementation strategies. J Med Internet Res 2008; 10 (04) e34
    CrossrefPubMedGoogle Scholar
  • 42 Luchenski SA, Reed JE, Marston C, Papoutsi C, Majeed A, Bell D. Patient and public views on electronic health records and their uses in the United kingdom: cross-sectional survey. J Med Internet Res 2013; 15 (08) e160
    CrossrefPubMedGoogle Scholar
  • 43 BSI. Health Informatics - Requirements for an Electronic Health Record Architecture. BS ISO 18308:2011. UK: The British Standards Institution (BSI); 2011
    Google Scholar
  • 44 White A, Danis M. Enhancing patient-centered communication and collaboration by using the electronic health record in the examination room. JAMA 2013; 309 (22) 2327-2328
    CrossrefPubMedGoogle Scholar
  • 45 BSI. Health Care Services - Quality Management Systems. Requirements Based on BS EN ISO 9001:2015. UK: The British Standards Institution (BSI); 2012
    Google Scholar
  • 46 Burns AS, Yee J, Flett HM, Guy K, Cournoyea N. Impact of benchmarking and clinical decision making tools on rehabilitation length of stay following spinal cord injury. Spinal Cord 2013; 51 (02) 165-169
    CrossrefPubMedGoogle Scholar
  • 47 Johnston GP, Bowen DV. The benefits of electronic records management systems: a general review of published and some unpublished cases. Rec Manage J 2005; 15 (03) 131-140
    PubMedGoogle Scholar
  • 48 Porter SC, Forbes P, Manzi S, Kalish LA. Patients providing the answers: narrowing the gap in data quality for emergency care. Qual Saf Health Care 2010; 19 (05) e34
    PubMedGoogle Scholar
  • 49 Grant RW, Wald JS, Schnipper JL. , et al. Practice-linked online personal health records for type 2 diabetes mellitus: a randomized controlled trial. Arch Intern Med 2008; 168 (16) 1776-1782
    CrossrefPubMedGoogle Scholar