A key challenge in gaining the fullest understanding of patient experience is ensuring the experience of "hard to reach" groups is collected. There are many reasons why it can be hard to get the views of certain patients - for example, extremes of age, culturally-related or due to the nature of their illness.
But the experience of these patients is amongst the most valuable of all data if providers are to truly meet the needs of all those they serve.
One solution is to collect the views of carers or proxies for the patient. Research shows that agreement between the patient’s and the carer's account is good for aspects of care relating to service provision and communication.
Collecting views of carers is integrated within the iWantGreatCare process and tools to ensure that organisations have the fullest understanding of their users.
Reference:
Judging the quality of care at the end of life: can proxies provide reliable information?
McPherson C.J.1; Addington-Hall J.M.
Social Science and Medicine, Volume 56, Number 1, January 2003 , pp. 95-109(15)
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