Developing patient information

Here's the shared example

A patient driven and co-developed initiative to develop patient information for Acanthamoeba Keratitis. This leaflet is designed for patients, as well as their relatives, friends and carers, to help explain Acanthamoeba Keratitis (AK) and its impact. AK is an infection of the cornea, the clear ‘window’ at the front of the eye, that can be incredibly painful. The infection is caused by a microscopic organism called Acanthamoeba, which is common in nature and is usually found in bodies of water as well as domestic tap water, swimming pools, hot tubs, soil and air. The infection is most common in contact lens wearers, who have somehow exposed their lenses to water. Around a quarter of AK patients require a corneal transplant to rehabilitate their vision, and many patients report difficulties in coping with the disease, and in particular with its emotional impact.

Moorfields Eye Hospital in association with the NIHR Biomedical Research Centre arranged a Cornea Day in 2013 for patients, families, friends and carers to hear about research in corneal diseases like AK. Many patients had queries and concerns about their condition and wanted practical advice on coping day to day with AK.

After the Cornea Day 2013, Irenie and Nicole Carnt, research Optometrist at Moorfields Eye Hospital, gathered suggestions from patients and clinicians at the event, grouped into relevant themes, and put together an online survey for patients and clinicians to prioritise what to include in a patient information leaflet. Advice was also sought from Simon Denegri, NIHR National Director for Public Participation and Engagement in Research, who advised that the team should be clear on intended audience, set up an advisory group to review drafts of the leaflet, and have one author for consistency in tone.

Over 70 responses were received from the survey from patients, clinicians, researchers and other hospital support staff. Respondents were asked to give their responses on a 5 point scale according to how important each question was for inclusion in patient information, along with a free text section to add own thoughts or suggestions. Data from the survey was analysed and a core leaflet structure was developed, which was shared and approved by the advisory team.

A first draft was created by Irenie and shared with clinicians and the core team of patients. Comments were received by corneal fellows and a group of patients and edits made, as well as testing of the leaflet on ‘new’ patients for fresh input and thoughts. An AK Patient Group meeting in October 2014 made up of 30 patients, friends and family then reviewed the penultimate draft and discussed clinician comments, as a final opportunity to raise concerns and add new points for inclusion.

The leaflet is the only patient information on AK in existence (as far as is known) and is a factually accurate, evidence based document which addresses an important need for patients- to have information on their condition, how to manage it and the key things to expect from their treatment. It was produced in a truly collaborative process, initiated by patients with the support of Nicole Carnt, Moorfields BRC and the Corneal/External Diseases Team.

Population groups: 
People with long term conditions
People with rare diseases
People with sensory impairment or other communication needs
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