Work package 2b: observational and experimental studies

 

Objectives

About iPEx

Acknowledging the diverse quality of online patient experience, our aim was to use observational and experimental studies to find out how people select from the various patient experiences available online.   We wanted to understand how they used patient experience to support or inform their own health and life-style choices and also to assess how exposure to patient experiences might influence recall of health material and patient decision-making. We addressed the following four research questions:

  • What factors influence patient sampling of online patient experience and how do patients determine which sites and/or experiences merit further attention?
  • Do patients’ own sampling strategies bias their exposure to health information and advice?
  • How does exposure to online patient experience influence decision-making and other health related outcomes?
  • Does PEx offered in unstructured, unregulated settings lead to different sampling and outcomes compared to more structured sites?

We used participatory and exploratory workshops and focus groups designed to elicit patient opinion of existing sites. We also conducted experimental studies that controlled for the design and content of PEx sites in order to assess health related impact.

Team members

This work was conducted by Pamela Briggs, Elizabeth Sillence and Claire Hardy (University of Northumbria and the PaCT Lab) and Peter Harris (University of Sussex).

Pamela Briggs Elizabeth Sillence Claire Hardy Peter Harris

Pamela Briggs, Elizabeth Sillence, Claire Hardy and Peter Harris.

Brief summary

iPEx briefing paper 6

Publications

Patients now turn now turn to other patients online for health information and advice in a phenomenon known as peer-to-peer healthcare. This paper describes a model of patients peer-to-peer engagement online, based upon qualitative studies of three patient or carer groups, people with asthma, people wishing to stop smoking and family and friends of people with MS. The framework described was used to generate guidelines which describe how best to present patient experience online.

An engagement framework for understanding the communication needs of different health groups.

See also:

How do people with asthma use Internet sites containing patient experiences?