Discussion Groups

Title: Ocular Coherence Tomography (OCT) study.

Date PPI Involvement: February 2019

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People contributing: 6 research community members contributed.

Main aim of the activity: To review the patient information sheet for the Ocular Coherence Tomography (OCT) study.

Purpose and Outcome: Patients with known wet AMD were contacted to review the patient information sheet for the OCT study. They gave feedback on language, understanding, abbreviations, jargon and made recommendation on anything they felt would be helpful. Feedback was passed on to the researchers for alterations before being submitted to ethics.

Title: Discussion group on Assistive Technology

Date of Focus Group: 14^th February 2019

Condition Addressing: Assistive Technology

Number of People in attendance: 7 people with visual impairment, 2 sighted supporters. There were also 2 healthcare professionals and 2 PPI facilitators.

Main aim of the project: To discuss the feasibility of a possible patient day on assistive technology targeted at people who have a lower level of awareness about what might be available to them..

Purpose and Outcome of Focus Group: A discussion group was held to discuss the feasibility of running an assistive technology day. Five of contributors had previously delivered assistive technology training. The aim of the discussion was to: increase our knowledge of the depth and breadth of different technologies already available/most commonly used, learn where people get their information on accessibility technology from and how to reach the target audience, understand what an event on assistive technology should be able to deliver for the target audience.

Feedback and recommendations were collated and passed to the healthcare professionals to look for funding opportunities.

Title: Discussion group on ocular prosthetics

Date of Focus Group: 6^th December 2018

Condition Addressing: Ocular Prosthetics

Number of People in attendance: 3 people who wear ocular prosthetics. There were also 1 study researchers and 1 PPI facilitators and one notetaker present.

Main aim of the project: To discuss patient priorities when been fitted with a prosthetic eye and to review prototypes of 3D prosthetic eyes.

Purpose and Outcome of Focus Group: A discussion group was held with a ocular prosthetic users, to discuss what is important to them when being fitted with a prosthetic and what their concerns and priorities are. They were also given the opportunity to look at the 3D prosthetic eyes and give feedback on how they compare to the current process.

Feedback and recommendations were collated and have been incorporated into the study’s protocol for future funding applications.

Title: Current Understanding, treatment and management of Fuchs’ Disease:

Date of Focus Group: 27^th September 2018

Condition Addressing: Fuchs

Number of People in attendance: 6 people with a diagnosis of Fuchs disease. There were also 2 study researchers and 2 PPI facilitators and one notetaker present.

Main aim of the activity: This was an exploration exercise to investigate patients views on gene therapy, Fuchs and future treatment options.

Purpose and Outcome of Focus Group: To look at what are the current challenges with Fuchs disease and treatment. What part does gene therapy play and what are the openings and opportunities for future research in early treatment.

Patients identified a need for early diagnosis and good patient information. They recognised the value gene therapy could have but also highlighted the need for more genetic counselling. One of the most important aspects for patients was the effect on the patient’s children in terms of passing on the disorder. For new treatments patients wanted to see clear benefits and well documented sort and long term side-effects.

Feedback was collated by the facilitators, reviewed by the participants and shared with the researchers.

Title: STOP AMD

Date of PPI Involvement: August 2018

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People contributing. 4 patients.

Main aim of the activity: Contributors from an earlier focus group were asked to complete a questionnaire around blood test for diabetes.

Purpose and Outcome: As a follow on to the discussion group regarding statins and AMD further input was requested. The study had reached the next stage for funding and a question had been raised by the funding body, regarding whether a blood test for diabetes is required. The questionnaire was completed by 4 contributors, collated and passed to the researchers who responded to the funding body.

Title: Wellbeing and AMD

Date of first Focus Group: 13^th February 2018

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People in attendance: 8 patients or relatives. There were also 3 healthcare professionals and PPI facilitators present.

Main aim of the project: to set up a study to investigate the practicality of a follow-on Clinical Trial testing a new tailored intervention looking at psychological influences to promote well-being in people with age-related macular degeneration.

Purpose and Outcome of Focus Group: A focus group was held to obtain people’s perceptions of the proposed study design, discuss what data should be captured in the study, and gather their opinions on talking therapy as a treatment for AMD

The patients highlighted areas of patient experience that could be supported by the intervention and gave advice on how the intervention could be flexible to be better tailored to each individual. Questions were also discussed around the delivery of talking therapy in an NHS setting.

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

Title: The acceptable use of anonymised patient data

Survey Open: 28th October 2017 to 13^th November 2017

Condition Addressing: Survey on the acceptable use of anonymised patient data

Number of responses: Total number of responses: 102 (71 online; 31 by post); 21% response rate

Purpose and Outcome of survey:

Main aim of the project: To gather patients thoughts around using people’s anonymised data from hospital appointments for research purposes.

A survey was administered online and by post to patients to gather their views on the use of high quality eye scans collected for clinical purposes being anonymised and then used for research. The question of consent and whether it is required for this type of data usage was a particular focus. On the whole the response was positive. A couple of caveats were: Data leakages were a concern and the insurance of this not happening. People were more likely to prefer consent when data specifically referred to the individual rather than a population.

The results were collated and fed back to the researcher and have been incorporated into a permission request to the NHS.