Maria Hägglund*, Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden Nadia Davoody, Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden Peter Bolin, Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden Casper Winsnes, Chorus AB, Stockholm, Sweden Nina Lundberg, CLINTEC, Karolinska Institutet, Stockholm, Sweden Vivian Vimarlund, Linköping University, Linköping, Sweden Sabine Koch, Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden Track: Research Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Rapid-Fire Presentation Submission Type: Single Presentation Building: Joseph B. Martin Conference Center at Harvard Medical School Room: C-Rotunda Room Date: 2012-09-15 04:45 PM – 05:30 PM Last modified: 2012-09-10

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Background: Throughout Europe there is an increase in individuals with long-term conditions that require services from health and social care, as well as active inclusion of patients and family carers in decision-making and care planning. Patients and citizens are increasingly requesting access to and control over their health information by e.g. online access to electronic health records. However, as patients are increasingly receiving care from several care providers, information needs to be presented as a patient-centered, continuous, inter-organizational care process. Therefore the Swedish research project ”My Care Pathways” aims to create new mobile citizens’ services that allows patients to follow, own and manage their care process related information. Three health conditions are in focus; stroke, lung cancer and hip surgery; here, the focus is on the stroke care process.

Objective: To describe stroke patients’ needs for information related to the inter-organizational care process.

Methods: Focus group meetings were used to capture stroke patients’ needs for information access in relation to the stroke care process. In a series of three workshops, the authors worked together with a group of 4-8 stroke patients (all of them active in the local stroke patient association with increased insight in current stroke care processes). Here we present results captured at the first meeting; identifying key areas where process related information access may aid patients.

Result: The characteristics of the stroke care process varies over time; from time-critical acute care, across care at specialized rehabilitation clinics, to long-term homecare, secondary prevention and social care. The stroke patients’ need for information support accordingly differs at different stages. The focus group participants experienced limited awareness and inability to process information during and immediately after the acute phase; information provided regarding their diagnosis and treatment during this phase was therefore largely lost and a need to be able to return to this information in detail later on, as they start to recover, was expressed. Lack of continuity of care was described after discharge from the hospital, and being able to keep track of the flow of information and handover of responsibilities may increase the patients’ feeling of safety and security. Focus group participants perceived that stroke patients often loose contact with healthcare after hospital discharge. In addition, the stroke patients requested services that support patients in making informed choices of care providers for homecare and social services, as well as individualized guidance in the rules and regulations that govern access to rehabilitation, homecare and social services.

Conclusions: Care processes have inherent characteristics that influence the patients’ need for information. In stroke care this manifests as different patient requirements at different stages of the process. Therefore it is important to develop future patient information systems that are adaptable to and can guide the patient through the care processes. To address this, future work needs to focus on inter-organizational access to information, and easy to use patient applications adapted to different process-related situations. In “My Care Pathways” we will continue to develop applications that can meet patients’ process related information needs.