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Developing a web-based information resource for palliative care: an action-research inspired approach.

Annette F Street¹, Kathleen Swift, Merilyn Annells

¹Clinical School of Nursing, La Trobe University/Austin Health, Lv 4 Austin Tower, Heidelberg VIC 3084, Australia. A.Street@latrobe.edu.au

BMC Medical Informatics and Decision Making

|September 15, 2007

Summary

Engaging users in palliative care website development is crucial for creating relevant online resources. This collaborative approach ensures content meets the needs of clinicians, allied health professionals, patients, and caregivers.

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Area of Science:

Health Informatics
Web Development
Palliative Care

Background:

General Practitioners and community nurses require accessible, evidence-based online palliative care information.
Methods for scoping user-identified online information needs in palliative care are underexplored.
This study details a collaborative user-expert approach for developing a palliative care website.

Purpose of the Study:

To describe the benefits and challenges of a user-expert collaborative approach.
To inform the development of a palliative care website by scoping information needs.
To identify distinct audience needs for palliative care online resources.

Main Methods:

Action research-inspired methodology.
Panel assessment of an existing palliative care website.
Pre-development survey (n=197) and working parties for needs analysis.
Iterative evaluation involving users and experts; final survey (n=166).

Main Results:

User involvement is resource-intensive but provides crucial insights for website scope and development.
Palliative care peak bodies must address three key audiences: clinicians, allied health professionals, and patients/caregivers.
User participation guided website audience expansion and content development.

Conclusions:

Web developers must consider content, language, and accessibility for diverse user groups.
Collaborative development, engaging users in content definition, ensures relevance and responsiveness.
Volunteer networks are integral to maintaining authoritative, cost-effective health information sites.