Involving users in ehealth research

John Powell
University of Warwick, UK

Topic: Evaluation and methodological issues in ehealth
Track: Practice
Type: Oral presentation

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     Last modified: September 25, 2006
     Presentation date: 10/16/2006 4:30 PM in RYH Tudor 8
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Abstract
This talk addresses an important need for all ehealth researchers: how to effectively involve consumers in our work. It draws both on the experience of the presenter who established the Warwick Ehealth User Group and has worked with users on several projects, and on the work of Involve (www.invo.org.uk), a leading national advisory group on public involvement in research funded by the UK Department of Health.
This talk will answer these important questions:
- What are the benefits of involving consumers in ehealth research?
- Who should be involved and where do I find them?
- At what stage in the research process should they be involved?
- What methods can I use to involve them?
- Should ehealth research use e-methods to involve e-consumers?
User involvement in research is not the same as undertaking research on users. It is about understanding and incorporating the user perspective into the project, often from the very initial stages. Effective user involvement can bring many benefits to ehealth research projects – from identifying the most relevant outcome measures, to aiding recruitment of research participants, to assisting the dissemination of findings. The three levels of consumer involvement have been categorised as consultation, collaboration and user controlled, and this talk will explain each in the context of ehealth research, together with an assessment of their benefits and disadvantages. The talk will also examine the stages of research at which consumer involvement has the potential to bring most benefit. Finally we will consider the various methods to involve consumers in ehealth research with a particular emphasis on the use of e-methods. Throughout the talk we will use case examples our own experience and from the wider research literature.