Visual frailty: A PPIE reflection

Wanok Godfrey - PhD Student

Prior to the session:

I always knew I was going to have a meeting with the PPIE team but never thought it was going to be this soon. By the time of the meeting, I had attended the review meeting with the South East Scotland Research and Ethics Committee (REC) 01 which also emphasised the need to have PPIE meeting much earlier before the implementation phase of the project. It is mandatory for every study involving patients or the public to have participant facing documents reviewed by patients and members of the public prior to recruitment and implementation.

I initially thought it would be an extremely arduous process to recruit participants for my project but the PPIE coordination team at the ACRC academy simplified the process. All I had to do is complete a PPIE role description document and send it to the PPIE officer who shared it within the ACRC academy PPIE networks.

I was impressed with the fast response rate of the participants who were willing to take part in my study and within a few days, I got a list of participants who were willing to take part in the project.

During the session:

I started by giving a quick overview of my PhD project and how I intend to implement it. We then discussed about the definition of visual frailty, the content of my Participant Information Sheet (PIS), non-validated questionnaires and finally the consent forms.

The feedback I got about the definition helped me to refine it in such a way that is not only comprehensive but also easily understood by members of the lay audience. When it came to the PIS, I had used a lot of abbreviations which were defined earlier in the document but realised that it would be better to write all of them in full instead assuming that it would be obvious. We also made sure that some of statements are much easier to understand like the tool that was being referred to in the project. Most of the statements were referring to a tool but based on the comments and feedback, I realised that this tool was not clearly defined in the PIS. After reading the document with all the implemented changes, I realised that it was much easier to follow and understand.

Some of the advice I got about the non-validated questionnaires was like what was raised about the PIS; however, I was requested to review the orders of the questions to make sure that they could flow easily. From the meeting, I was informed that it would be better to share these questionnaires with the participants in advance so that they can familiarise themselves with the questions and enable them to prepare their responses.

In conclusion, the PPIE meeting reshaped my study in terms of the Participant facing documents and it was inspiring to hear all the feedback and comments about the project. I look forward to engaging with the team again in the future during the implementation and dissemination phase of the study. One of the most important lessons I learnt was that what we sometimes consider to be lay-friendly is actually not which is why it crucial to involve patients and participants at every stage of the project.

Stella Findlay – PPIE Contributor

Being involved in PPI allows a voice to those of us living with conditions being researched. The input of first-hand experiences is aimed at assisting in the development of medicines and aids as well as influencing the perception of others of a variety of conditions.

Visual frailty research is of vital importance to us. The condition encompasses eyesight problems that affect many or perhaps most of us as we age. An ageing population is likely to present an increase in numbers as well as more complex eye problems.

My eyesight problems have worsened gradually but more speedily as I’ve aged and I’m now being monitored regularly at the eye department of RVI Newcastle. I have witnessed a friend with macular degeneration (wet in one eye, dry in the other) deteriorate over the years and become more dependent upon others.

Any degeneration of eyesight has a detrimental effect on many aspects of normal life as well as diminishing confidence. I try to adopt a positive attitude - it’s possible that other senses such as touch and hearing improve and make some compensation for worsened eyesight.