Research article

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

Annette F Street¹ , Kathleen Swift¹ , Merilyn Annells² , Roger Woodruff³ , Terry Gliddon⁴ , Anne Oakley⁵ and Goetz Ottman¹

¹Clinical School of Nursing, La Trobe University/Austin Health, Lv 4 Austin Tower, Heidelberg VIC 3084, Australia

²Nursing & Midwifery, La Trobe University, Bundoora VIC 3083, Australia

³Director of Palliative Care Austin Health, Suit 9, 210 Burgundy Street, Heidelberg VIC 3084, Australia

⁴Research and Development, Royal District Nursing Services, 31 Alma Rd, St. Kilda VIC 3182, Australia

⁵CEO, Melbourne City Mission, 471 Nicholson St., North Fitzroy VIC 3068, Australia

author email corresponding author email

BMC Medical Informatics and Decision Making 2007, 7:26doi:10.1186/1472-6947-7-26

Published:	14 September 2007

Abstract

Background

General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website [1].

Method

The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166).

Results

Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers).

Conclusion

Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.