Evidence Library

Title: Patient participation in health research: research with and for people with spinal cord injuries.
Author: Abma, T.
Date Published: 2005
Reference: Qualitative Health Research, 15(10), 1310-1328.
Are service users or carers authors: No/Not Known


Aim: To develop a new research agenda for the Spinal Cord Injury Association in the Netherlands, based on the priorities of people affected by a spinal cord injury.

Methods used: Three researchers, one of whom had a spinal cord injury and was a member of the Spinal Cord Injury Association, used a range of methods to listen to people's views. These included interviews, workshops and a web based discussion.

Findings/recommendations: This study was the first of its kind in the Netherlands. The involvement of a researcher with a spinal cord injury proved to be crucial for the success of the study. Priorities identified were very different to current research practice in the Netherlands.

The paper describes the barriers that researchers faced in developing a research agenda based on the views of people affected by a spinal cord injury, and reflects on how these barriers might be addressed in future.

The author suggests the adoption of a 'responsive-constructivist approach', where stakeholders are seen as partners, and that much could be learned from action research and medical anthropology.

External link: The following links will take you to information on this entry on an external website. INVOLVE is not responsible for the content or the reliability of the external websites. Link to PubMed abstract

Related entry: none currently available

Categories: health
Identifying topics, prioritising and commissioning
impact on funding/commissioning
impact on research
impact of public involvement
reflecting on public involvement in research
journal article

Date Entered: 2007/02/21

Date Edited: 2012/11/21

Additional Info: