Maria Hägglund*, Karolinska Institutet, Stockholm, Sweden Track: Practice Presentation Topic: Usability and human factors on the web Presentation Type: Rapid-Fire Presentation Submission Type: Single Presentation Building: Mermaid Room: Room 4 - Queenshithe Date: 2013-09-23 11:45 AM – 01:00 PM Last modified: 2013-09-25

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Patient’s today are no longer satisfied being passive recipients of care, they want shared decision making and access to their own health data. Patient-centeredness of healthcare is a well-established and non-controversial quality characteristic ensuring that care should be respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. Many initiatives to provide eHealth for patients, or consumer health informatics, are undertaken to provide patients with access to health information and other services. Yet, so far most development projects are undertaken from a healthcare perspective, rather than a patient-perspective. Having as a starting point what information is available to provide to patients (rather than what they actually want), and what information healthcare professionals want to monitor (rather than what the patients want to tell their healthcare professionals), is not a patient-centered design process. Based on this and experiences from several user-centered eHealth projects [1], [2] , some key concepts from the ISO9241-210 standard “Human-centred design for interactive systems” were translated into recommendations for “Patient-centered design for eHealth”.

Design of the eHealth service is based on an explicit understanding of the patient, the patient’s health related tasks/activities and environments. This is of course not only limited to the interaction with healthcare, but it needs to be a deep analysis and understanding of where and how the patients are to use the system.
Patients are involved throughout design and development. Every one of us is a patient in some sense, but as a healthcare professional, or e-health designer, you are ruined as a patient representative since you have other knowledge and assumptions that affect you. Make sure to recruit and actively involve real patient representatives throughout the design process.
The design is driven and refined by patient-centered evaluation. It is imperative to perform formative evaluations with patients to ensure that the proposed eHealth solutions meet their needs.
The design addresses the whole patient experience. Take into consideration how this eHealth system fits into the patient’s entire healthcare journey. Do not focus exclusively on the health objectives deemed important from a healthcare professional perspective; consider the needs and preferences of the patients who will actually use the system. If the design does not inspire usage, it does not matter how well-intended the clinical intervention is.

Conclusion: Active patient participation in development of eHealth for patients is crucial, and translating the human-centered design concepts to patient-centered design guidelines can be an important way to adapt design processes accordingly.

[1] I. Scandurra, M. Hägglund, and S. Koch, “From User Needs to System Specifications: Multi-disciplinary Thematic Seminars as a Collaborative Design Method for Development of Health Information Systems,” Journal of Biomedical Informatics, vol. 41, no. 4, pp. 557–569, 2008.
[2] M. Hägglund, I. Scandurra, and S. Koch, “Studying intersection points - an analysis of information needs for shared homecare of edlerly patients,” Journal on Information Technology in Healthcare, vol. 7, no. 1, pp. 1–20, 2009.