Trials to evaluate the impact of online patient experience need to identify the most appropriate outcomes. The range of relevant outcomes is potentially large and may be addressed, in part, by some existing measures – e.g. health status and health-related quality of life, emotional adjustment, coping and decisional conflict. However, because research on online patient experiential information is in its infancy, no assessment tool exists that can identify the unique components that are likely to be affected.
It is unlikely that a single measure could capture the full gamut of health effects associated with exposure to online patient experience across all of the clinical areas. Our approach has been to:
- identify, through the review in WP1a, the outcome measures that have been used to measure potential effects
- identify the core domains for a generic instrument which can then be supplemented by condition-specific items.
The development of the e-health impact questionnaire (e-HIQ) was conducted as doctoral research and therefore considerable detail was recorded about the selection of the core domains and the condition-specific elements. The tool was developed using the conceptual framework (WP1a) and drew on the secondary analysis (WP1b) as a source of statements to be turned into questionnaire items. Domains include the potential positive and negative effects of exposure to patient experience on support, knowledge and understanding, decision-making, self management and health outcomes.
This work was conducted by Laura Kelly, Crispin Jenkinson and Sue Ziebland from the University of Oxford.
Our analysis suggests that individuals who use the internet in relation to their health may be affected across the five key generic themes: (1) information, (2) feeling supported, (3) relationships with others, (4) experiencing health services, and (5) affecting behaviour. These themes are applicable across a range of conditions. This paper documents the steps taken to inform items that will be included in the e-Health Impact Questionnaire.