The e-Health Impact Questionnaire – Oxford University is looking for multiple sclerosis caregivers
Carers of people with Multiple Sclerosis
Patient experiences of ill-health can be an important source of information to other people with the same condition. Traditional health information has been based on facts and figures, not the experiences of other patients or carers of people with similar conditions. Today health websites can contain traditional health information, accounts or stories of people’s experiences of health, blogs about health and discussion boards. It is important to understand what impact these health websites have on patients and carers.
A research team in the University of Oxford are researching the effects of sharing online patient and carer health information. They wish to find the best way to incorporate people’s experiences into health websites. One component of this research involves developing a questionnaire (The e-Health Impact Questionnaire) which asks people about sharing health experiences online. They would like your help to find out whether the questions are easy to understand and accurately reflect the effects of sharing health experiences online for carers of people with Multiple Sclerosis.
The development of the e-Health Impact Questionnaire is being carried out in collaboration with a number of study groups in Northumbria, Warwick, Oxford and Scotland. Together, they hope to incorporate this questionnaire in clinical trials in the later stages of the study. These trials will include a population of ‘carers of people with Multiple Sclerosis’ so it is really important to establish if the questionnaire is suitable for this purpose before the trials commence.
This research will help the Programme to make policy recommendations about how personal experience information can best be used in health websites to improve patient support and well-being. The Programme is funded by the National Institute for Health Research.
Can you help with this research?
The research team are asking people who care for people with Multiple Sclerosis, are aged 16 or over and have access to the internet to take part in this questionnaire. You must also live in the United Kingdom.
What will taking part in this study involve?
Taking part in this research will involve approximately 20-25 minutes of your time. Participants are asked to complete a set of questions about their general views of health websites. They are then asked to look at a website about Multiple Sclerosis and answer a set of questions relating to that website.
Please click on this link to take part in the questionnaire: www.survey.bris.ac.uk/oxford/ms
If you would like to contact the research team, you can reach them by emailing Laura Kelly at laura.kelly@hmc.ox.ac.uk
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