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Patient involvement

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The role of patients in the HOME initiative is crucial. We need to ensure that the outcome measures that are included in the core set reflect what is important to patients with eczema and carers of eczema patients.

We already have a number of patient representatives from around the world involved in HOME, but would welcome more. So if you have eczema or look after someone with eczema and you would like to know more about how you can get involved please contact the HOME initiative co-ordinator Jo Chalmers.

Patient experiences of attending core outcome meetings

If you'd like some more information about what attending a meeting is like, then we'd recommend looking at the information produced by the OMERACT group.

The OMERACT group is looking at core outcomes in rheumatology. They have published a study about patients' experiences of attending one of their meetings. You can read the results of there study here.

Importance of involving patients in identifying core outcomes

Core outcome measures are important in all areas of research, not just eczema. 

The COMET Initiative (Core Outcome Measures in Effectiveness Trials) has produced a plain language summary which explains why it is so important for patients and carers to be involved in developing core outcome measures.  You can read this summary here.
"I was feeling a little nervous about meeting so many eczema experts from all around the world, and worried that I wouldn’t be able to follow what they said.

But the other delegates soon put me at ease: the researchers asked us patients plenty of questions and very much treated us as equals."


Read more about Tim's reflections on taking part in the HOME III meeting (page 8).

 

HOME works with patient groups from around the world

 

 

HOME - Harmonising Outcome Measures for Eczema

Centre of Evidence Based Dermatology
University of Nottingham
King's Meadow Campus
Lenton Lane, Nottingham
NG7 2NR, UK

Telephone: +44 115 8232435
Fax: +44 115 8468618
Email: HOME@nottingham.ac.uk