Putting the patient voice at the heart of clinical guidelines

Post date: 
Tuesday, 14 March 2017
NICE guidelines

RNIB is seeking to talk to patients who have three of the most prevalent sight loss conditions in the UK to help shape clinical guidelines set out by the National Institute of Health and Care Excellence (NICE).

 
With the help of guideline development panels, NICE will write new clinical guidelines and update existing guidance for the eye conditions age-related macular degeneration (AMD), glaucoma and cataracts. Stakeholders will be given the opportunity to offer feedback on the drafts which will take place during Spring and Summer before the final guidelines are approved later this year. 
 
RNIB will respond to each of the clinical guidelines and are in the process of registering patients to complete surveys and carry out in-depth interviews.
 

RNIB’s Eye Health Campaigns Manager, Jess Hall, said: “It is essential patients are at the centre of eye care management conversations. This means ensuring that patients not only have a voice in the treatment room but in the writing and shaping of the very guidance that determines their clinical care. That’s why RNIB is responding to the NICE Clinical Guideline consultations based on what people living with these conditions tell us.”

What are the guidelines used for?

 
NICE Clinical guidelines recommend how healthcare professionals should deliver care for patients. In the case of AMD, cataracts and glaucoma, NICE are producing guidelines on the diagnosis and management of these conditions. The guidelines include various aspects of treating the conditions from the information and emotional support offered to patients to diagnosis and management strategies. 
 

Why is it important to include the patient voice?

 
Hall added: “Any guideline should be developed with a range of stakeholders, but it is vital that patients are offered the opportunity to be part of the process. Who better to inform what sort of information and support should be given to patients than patients themselves.
 
“I encourage all health care professionals working with patients who have AMD (wet and dry), cataracts and glaucoma to invite them to take part in our research.” 
 

When and how should patients register?

 
The research will take place during the consultation period to ensure that patients are commenting on the content of the draft guidelines. Patients should register in advance of the guideline relevant to them.
 
AMD (wet and dry): register by 27 April 2017
Cataracts: register by 17 April 2017
Glaucoma: register by 12 June 2017
 
If any of your patients would like to take part, please ask them to call RNIB’s Campaigns hotline on 020 7391 2123, email campaigns@rnib.org.uk or sign up directly at rnib.org.uk/yoursayyourtreatment.
 
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