Patient and Public Involvement – Activities

The NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology seeks ways to support the involvement of patients and the public in influencing the vision research that is conducted on our site.

We need the views, experiences and insights of patients, family members and friends to ensure that research meets the needs of people affected by eye conditions. There are many ways that patients and the public can get involved in influencing research.

By inviting patients to share experiences of what it is like to live with a particular condition, researchers are able to: gain insight into the impact of a condition on people’s lives so that they can design surveys of large numbers of people and then plan research projects of true relevance to needs; discuss the priority of questions that need to be answered through a research project; seek opinion on the acceptability of the procedures that could form part of a project. 

 

Here are some examples of activities that have been held since 2014:

Title

The FLAIR Study

Date of first Focus Group: 

21st February 2017

Condition Addressing:

Retinitis Pigmentosa (an inherited retinal condition)

Number of People in attendance:

8 patients or relatives. There were also 3 healthcare professionals and PPI representatives present. 

Purpose and Outcome of Focus Group:

FLAIR is looking to determine whether Iluvien – a drug used to reduce inflammation of the eye in people with diabetic macular oedema – might be of benefit to people with Retinitis Pigmentosa who have inflammation, which may be a contributing factor to their retinal damage and vision loss.

A focus group was held to obtain the patients’ perception on the proposed study design, discuss what data should be captured in the study, and gather their opinions on the risk of possible side effects of Iluvien.

The patients also contributed thoughts about what information should be given to patients when they are being recruited for the study to allow them to provide informed consent. Patients also discussed what care a patient will receive throughout their participation and whether they will receive the same standard of care if they chose to leave the study before the end of the study duration.

The feedback has been collated and will be incorporated into the study’s application for funding.

 

 

Title

The PUPIL Study Focus Group

Date of first Focus Group: 

23rd November 2016

Condition Addressing:

Chronic eye conditions

Number of People in attendance:

7 patients or relatives. There were also 4 healthcare professionals and PPI representatives present. 

Purpose and Outcome of Focus Group:

The PUPIL study is the second stage of Dr Pearse Keane’s 5-year clinician scientist award. We have previously held a similar focus group to address the first stage of this award, called the EASE study. Information about the EASE focus group can be found in a table below.

To recap - this prestigious clinician scientist award is hoping to develop a binocular OCT imaging device for people with chronic eye diseases such as retinal disease – in particular, age-related macular degeneration, glaucoma and strabismus. The first stage of the project, the EASE study, looked at the ‘usability’ of the device prototype. The second stage of the project, the PUPIL study, will look at whether the device can be used to detect pupil defects.

This focus group covered both the EASE study and the upcoming PUPIL study. The discussions included:

EASE:

- The results and learnings from the EASE study. Was there anything else in the study that can benefit from additional patient involvement?
- What information should be disseminated, to whom and through what channels?
- How can the results/data from the device be made available?

PUPIL:

- Overview of the PUPIL study, its aims and objectives and where learnings from EASE can be incorporated
- Comments on the protocol and design of the study

The feedback from this focus group will be used to help with the dissemination of the EASE study results and will also aid the study coordinator when the PUPIL study begins recruiting patients.

 

 

Title

AK Focus Group

Date of most recent Focus Group meeting:

23rd September 2016 (5th meeting of the group)

Condition Addressing:

Acanthamoeba Keratitis: this is a condition caused by an amoeba that can be transferred to the eye if contact lenses come into contact with water (e.g. by cleaning them with tap water, by wearing them in the shower or while swimming in a pool, etc.). The cornea can become irritated and it sometimes leads to blurred or double vision, pain and even loss of vision.

Number of People in attendance:

Between 15-30 people who have A.Keratitis, friends, relatives and carers at each of the focus group meetings.

Purpose and Outcome of Focus Group:

Patients with the condition formed a focus group with researchers, clinicians and patient representatives. These meetings were the first to be organised on this scale attended by patients with this rare condition.

A number of outcomes have arisen so far from the focus groups:

1. A patient-friendly information leaflet was produced about the rare condition.

2. A patient who designed a “no water” sticker for use on boxes in which contact lenses are packaged brought this project to the group for further discussion.

3. Patients and researchers produced a series of information films about cleaning contact lenses that were distributed to new university students in the autumn of 2014.

4. A case study research project was initiated that is looking into patients' experiences of the condition.

 

 

Title

The ARIES Study Focus Group

Date of first Focus Group:

18th May 2016

Condition Addressing:

Age-related Macular Degeneration

Number of People in attendance:

6 patients in attendance. There were also 2 PPI representatives present. 

Purpose and Outcome of Focus Group:

The NIHR Moorfields BRC held a focus group discussion for patients with AMD to gather their feedback on the patient information sheet and consent form for a study looking at whether Eylea, a treatment already on the market for AMD, could be given to patients less frequently without further risk of their wet AMD progressing. If this study proved that Eylea could be given less frequently to patients, this would mean that it might be possible to reduce the number of injections and visits to the hospital some patients would otherwise need.

The opinions from patients are very valuable and we wanted to use them to help us ensure that the information given to the study participants is understandable, easy-to-read and clear. This feedback was obtained through discussions and asking the patients to annotate the patient information before they arrived on the day.

The comments and feedback from our patient meeting were collated and used as the basis for a redraft of the patient information sheet and consent form for the ARIES study, which has now been approved.

 

 

Title

 The Glaucoma-Psychology Study Focus Group

Date of first Focus Group:

11th May 2016

Condition Addressing:

Mood and well-being in people with glaucoma (with a focus on narrow-angle closure glaucoma) and cataracts.

Number of People in attendance:

6 patients in attendance. There was also 1 healthcare professional and 2 PPI representatives present. 

Purpose and Outcome of Focus Group:


We invited individuals who have been diagnosed with glaucoma or cataract to take part in a short research discussion regarding an upcoming study that is aiming to understand mood and wellbeing in glaucoma.

The study discussed is aiming to explore whether there are any differences in mood and wellbeing in people diagnosed with primary angle-closure glaucoma compared with those with open-angle glaucoma or cataract. This is an important area of research because although it is known that improving mental wellbeing can help with overall eye health, there is very little research being conducted in this area.

Discussions were primarily based around the study design and thoughts on the overall research. However, patients also gave their valued feedback on three verified questionnaires which would be used to capture data in the study; BDI-II, STICSA, Life Events Scale.

Comments and feedback from this focus group were collated and is currently being analysed so that the project and it’s outcomes are relevant, clear and accessible to participating patients.

 

 

Title

Glaucoma Trial Testing The Effectiveness Of Current Eye Drop Treatments

Date of first Focus Group: 

18th February 2016

Condition Addressing:

Glaucoma (congenital glaucoma, hereditary glaucoma and normal tension glaucoma patients were represented at the focus group).

Number of People in attendance:

9 patients or relatives. There were also 3 healthcare professionals and PPI representatives present. 

Purpose and Outcome of Focus Group:

The aim of this Focus Group was to discuss a potential future study which will test the effectiveness of three different treatments for glaucoma - brimonidine, latanoprost or timolol.

We welcomed the attendees views on:

- The study outline and how the aim of the study addressed a ‘real world’ need for glaucoma patients
- The study design and protocol, including the proposed follow-up assessment and how this varied from standard practice
- Any possible side effects of the drugs and how a change in treatment won’t preclude recruited patients in the study
- Eligibility criteria and recruitment plan for the study
- Whether training on eye-drop bottle use would be helpful to patients
- Discussion on proposed outcome measures

The study protocol is currently being drafted which will also take into account the patient feedback that was collected at this focus group. 

 
 

Title

100,000 Genome Project

Date of first Focus Group:

12th September 2015

Condition Addressing:

Cancer, rare disorders and infectious diseases

Number of People in attendance:

13 patients, relatives, friends or carers. There were also over 10 healthcare professionals and PPI representatives present. 

Purpose and Outcome of Focus Group:

The 100,000 Genomes Project is a national scheme that aims to sequence, or analyse, 100,000 genomes (complete DNA) from participants with cancer, rare disorders and infectious diseases. It has been set up to help gain a better understanding of the genetic causes of these conditions and so improve their diagnosis and treatment. The NIHR Moorfields BRC held a focus group discussion for patients with different eye conditions to comment on the patient information and consent form.

The comments and feedback from our patient meeting were collated with other centres across the UK who conducted similar feedback exercises. The feedback is currently being analysed so that the project’s documents are clear and accessible to patients.

More information on this national project can be found at www.genomicsengland.co.uk

Also, one of the focus group attendees is a volunteer at 'Metro Blind Sport' which is a London sports charity that aims to open doors to sport for blind and partially sighted people of all ages and sporting abilities. The NIHR Moorfields BRC were able to introduce this volunteer to the nurse counsellors at Moorfields Eye Hospital, who now highlight any events or opportunites to patients through the Metro Blind Sport news bulletin.

 

 

Title

The EASE Study Focus Group

Date of first Focus Group:

30th April 2015

Condition Addressing:

Chronic eye conditions (people who may not have an eye condition but are over the age of 60 were also invited)

Number of People in attendance:

12 patients  relatives, friends or carers. There was also 1 healthcare professional and 3 PPI representatives present. 

Purpose and Outcome of Focus Group:

The attendees were invited to the focus group to take part in a short research discussion regarding a study that is developing new ways of testing vision. The purpose of this study is to test the ease of use (“usability”) of a prototype binocular OCT imaging device in people with chronic eye diseases such as retinal disease - in particular, age-related macular degeneration, glaucoma, and strabismus. After a presentation was given on the research study, we welcomed views on the proposed device and how it will be tested amongst patients.

The feedback gathered from the attendees on the device and the usability study covered:

1. Their impressions of the device and whether it might be improved.

2. What they thought about the logistics of the usability study and how individuals might be recruited to participate.

3. Comments were also gathered about the draft patient information sheet. The refined version of this document will be given out to patients who may be recruited to the study in the future. It is important to ensure this document accurately describes the study in a clear and understandable way.

The study has been funded for a 5-year period by the National Institute for Health Research (NIHR) through a prestigious clinician scientist award to Dr Pearse Keane.

 

 

Title

The PIMS Trial Focus Group

Date of most recent Focus Group meeting:

24th September 2014

Condition Addressing:

Macular holes: A macular hole is a small gap that opens up at the centre of the retina, in an area called the macula. A macular hole can cause blurred and distorted vision.

Number of People in attendance:

2 people who had experience of macular hole surgery and "positioning" after surgery.

Purpose and Outcome of Focus Group:

The purpose of this trial is to determine whether positioning face down for a period of time following surgery for macular hole improves the likelihood of success compared with positioning face forward.

Patients who had surgery to repair macular holes advised on the information needed by patients who are asked to ‘posture’ or ‘position’ themselves face down or face forward after surgery for several days. This information will be given out to patients who are now being recruited to a research study.

 

 

 

Title

Corneal Limbal Stem Cell Deficiency Focus Group

Most recent date of Focus Group meeting:

28th February 2014

Condition Addressing:

A focus group discussion was held for corneal limbal stem cell deficiency, which is a condition that sometimes arises in patients with Aniridia or Stevens-Johnson Syndrome. A deficiency of limbal stem cells caused by a condition can cause scarring and opacification of the cornea. This, in turn, can cause vision loss and some discomfort or pain. The severity of the symptoms can vary greatly and a proportion of cases can have healthy eyes with good vision.

Number of People in attendance:

6 people who had Aniridia, their friends, relatives and carers. The Aniridia Network UK patient group were also represented.

Purpose and Outcome of Focus Group:

The study is a qualitative research project which aims to develop a questionnaire that will help monitor people with corneal limbal stem cell deficiency.

At present, the outcome measures that are reported for limbal stem cell transplants are largely subjective and based upon the clinician's interpretation of physical signs, i.e. whether the cornea looks better or not. Few studies report the patient experience and there is no validated tool that can be used to collect qualitative data about the patient’s experience.

The focus group brought together clinicians and patients to discuss experiences of the condition and to develop a series of questions about the condition and impact on quality of life they believe are relevant. After obtaining the views from this group and analysing the information, a questionnaire was drafted which is currently been tested further by patients with corneal stem cell deficiency.

 

 

Title

The FACT trial Focus Group

Most recent date of Focus Group meeting:

16th January 2014  (there is now a Trial Steering Group which includes patient representatives)

Condition Addressing:

Cataract: cloudy patches that develop in the lens of your eye and can cause blurred or misty vision. They are very common.

Number of People in attendance:

5 people who had cataract and/or had experience of cataract surgery, their friends, relatives and carers.

Purpose and Outcome of Focus Group:

The aim of this trial is to evaluate the cost-effectiveness of laser-assisted cataract surgery compared to phacoemulsification. Cataract patients and researchers discussed the design of a trial to evaluate different ways of removing cataracts.

The feedback gathered from the attendees on the trial covered:

1. The key outcomes for measuring "success" of different treatments. Patients indicated the trial should measure visual acuity after treatment rather than the incidence of surgical complications.

2. Feedback was obtained about different questionnaires to be used throughout the trial to capture data.

3. Logistics and opinions on the current plan of having the Femto-laser treatment and the Phaco-surgical treatment being conducted at separate sites in London.

The research group was subsequently successful in gaining funding for the trial and will start to recruit patients in 2015.