The role of patient users in cancer genetics services in primary care

Abstract

There is much research that suggests all aspects of health care in the National Health Service should have patient user experience and input. This is to make sure service provision meets the needs of the local population. The Oldham Cancer Genetics team felt this was very important when developing a new service. Involving "patient users" meant the service kept the "client" at the centre of the planning process. It ensured all locally produced leaflets, family history questionnaires and patient pathways were tailored to the needs of people in Oldham. The "patient users" were invaluable at awareness-raising sessions for both health professionals and Oldhamers as personal experience always offers maximum impact.

The impact of patient advisors on healthcare outcomes: a systematic review

“…Ten studies described case-based evidence that participation in an advisory council had a therapeutic or positive benefit for the patients themselves [ 8 , 9 , 36 , 38 – 44 ]. A report of interviews with members of a children’s hospital teen advisory council found that participation fostered organizational skills and professional development [ 40 ].…”

“…Seventeen studies described how patient advisors helped develop materials for patient education or self-management [ 8 , 9 , 24 – 28 , 30 , 31 , 40 , 42 , 45 – 50 ]. Fifteen studies described how patient advisors recommended changes to a healthcare setting’s physical space, such as an improved waiting room, improved accommodations for physical disabilities, or improved layout [ 13 , 27 – 30 , 32 , 33 , 35 , 40 , 41 , 48 – 52 ].…”

“…Patient and family advisors are also a requirement within US Accountable Care Organizations, which are groups of doctors, hospitals, and other providers who coordinate spending in order to provide quality-based care for a designated group of patients rather than service-based care, in order to share in cost savings for reduced unnecessary care [ 7 ]. In the United Kingdom, patient involvement has a historical precedent of patient participation groups providing input for NHS primary care services since the 1970’s [ 8 ]. In Australia, trained consumer representatives sit on most medical committees [ 9 ] and consumer consultant positions have been developed in mental health services [ 10 ].…”