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Involving patients

Involving patients and their representatives in guideline development

Patient involvement is “the appropriate, active participation of patients, carers and patient representatives as partners in their own care and in the planning, monitoring and development of health services”.

Patients may have different perspectives on healthcare processes, priorities, and outcomes from those of health professionals. We involve patients and their representatives to ensure that the guideline addresses issues that matter to them and that their perspectives are reflected in the guideline.

Patients can identify issues that may be overlooked by health professionals, can highlight areas where the patient’s perspective differs from the views of health professionals, and can ensure that the guideline addresses key issues of concern to patients.

Identifying patients ’views

We identify patients’ views by:searching for published studies that reflect patients' and carers' experiences and preferences in relation to the clinical topic

  • asking organisations and charities to comments on issues they think guidelines should address
  • contacting other NHS organisations for local research on patient views
  • asking for direct feedback from service users through focus groups.

The information obtained from these approaches is fed back to guideline groups to influence the key questions underpinning the guideline.

More information on involving patients and their representatives in guideline development is given in SIGN 50: A guideline developer's handbook and on the patient involvement section of this website.

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