December 6, 2016
ICHOM (International Consortium for Health Outcomes Measurement – www.ichom.org) is a nonprofit organisation, working with healthcare professionals, registry leaders and patient representatives from around the world to define outcome measures (Standard Sets) that really matter to patients, and to drive the adoption and reporting of these Standard Sets worldwide. They are seeking volunteers to take part in a new project – parents of young children with facial palsy or people who had facial palsy in childhood.
ICHOM say that global comparisons are essential for patient safety and improvements in the quality of care since they set the stage for more rapid learning across institutions. ICHOM believe that the inclusion of patients and their families within the scope of the Standard Set medical condition(s) is essential in order to ensure that their final recommendations truly reflect what is most important to patients. ICHOM are currently working on developing a Standard Set for Paediatric Facial Palsy and are inviting patients to participate in one area of the project which is the Patient Focus Group, as follows:
- Patient Focus Group, a discussion amongst patients and patient representatives via video conference, with the purpose of capturing patients’ opinions and preferences. There will only be a single group meeting of about 2 hours. Patient information is protected and remains confidential.
The only pre-requisites for the participation of patients/ patient representatives are:
- To be parents of patients with Paediatric Facial Palsy or adult patients who were diagnosed with Paediatric Facial Palsy while they were aged 0 to 18 years.
- To be able to take part in teleconference calls in English, which will require a stable internet connection or ability to dial in via telephone.
Participation in the working group or in the focus group is on a voluntary basis and ICHOM will ensure that participants fully understand the process before taking part in it.
For more information please contact Dr. Alethse De la Torre (Standardisation Project Leader) firstname.lastname@example.org. Please do not contact Facial Palsy UK direct as this is an external project.
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