Design of a consumer health record for supporting the patient-centered management of chronic diseases

Learning points from paper

• For patients with chronic diseases, a patient-centered approach 1) increases the patient’s satisfaction  with their physician's care, 2) increases the patient’s interest  in the contents of their medical records and 3) improves the  patient’s overall health status. (See Maly RC. Bourque LB. Engelhardt RF. A randomized  controlled trial of facilitating information giving to  patients with chronic medical conditions: effects on  outcomes of care. J Fam Pract 1999;48(5):356-63.)
• Design criteria:
• record must be easily accessible by the patient as well as by  the care provider
• its contents must be  represented in a flexible manner so that it can be changed or  updated as a result of changing requirements of the patient  and/or provider
• system must  be able to exchange information with other systems by  means of standardized protocols (e.g., HL7 messages)
• patients  must be able to discuss public topics with other patients  and care providers, but also private topics with care  providers only
• patients must be provided with feedback or advice,  based on data, stored in the health record
• a  methodology must be selected that is able to produce valid trial results with a small number of patients, e.g. 10-50 patients
• Used the GASTON framework for computer-based guidelines
• The Psychological Health Profile screen was not very  popular amongst patients. Only one patient filled in the  form regularly. The patients did not see the advantage of  filling in this information. The diabetologist already in the  beginning was skeptical about the PHP questions.
• Patients had mixed feelings about the public discussion  forum but were rather positive about the private discussion forum
  

Critique of paper

Other comments

Citation and Abstract

Stud Health Technol Inform. 2001;84(Pt 2):1445-9. Design of a consumer health record for supporting the patient-centered management of chronic diseases. de Clercq PA, Hasman A, Wolffenbuttel BH.

Department of Medical Informatics, University of Maastricht, Maastricht, The Netherlands. P.deClercq@mi.unimaas.nl

This paper describes and discusses the design and usage of a shareable consumer health record system to investigate whether these systems can assist in the management of chronic diseases. This web-based system that can be used both by care providers and patients contains medical and patient information, provides access to websites that contain quality information, provides guideline-based advice, allows discussion between patients and allows us to interrogate both patients and care providers on a regular basis in order to get a good impression of the utility of such a consumer record for both chronic patients and the physicians and nurses. A health record system that was developed for the area of Diabetes is presented as an example.

PMID: 11604965 [PubMed - indexed for MEDLINE]

Related Links

• A consumer health record for supporting the patient-centered management of chronic diseases. [Med Inform Internet Med. 2003]
• Information system support as a critical success factor for chronic disease management: Necessary but not sufficient. [Int J Med Inform. 2006]
• Design and implementation of a web-based patient portal linked to an ambulatory care electronic health record: patient gateway for diabetes collaborative care. [Diabetes Technol Ther. 2006]
• ReviewTechnology integration for the provision of population-based equitable patient care: The Tayside Regional Diabetes Network--a brief description. [Diabetes Nutr Metab. 2001]
• ReviewInformatics systems to promote improved care for chronic illness: a literature review. [J Am Med Inform Assoc. 2007]