Patient and Public Involvement and Engagement (PPIE) is about working with ordinary people to produce better research. This includes people who use services, carers, and other community members to help shape our research and how we share results.

A Patient and Public Involvement and Engagement (PPIE) group has been involved in the design and planning of COBALT from the start.

The ongoing role of the PPIE group will be to help find the best way to recruit participants and give input on information provided to participants both before and during the trial. Once the trial has been completed, the PPIE group will advise on the dissemination of the findings of the trial.

We also have a PPIE representative who will take part in the Trial Steering Committee which monitors trial progress and conduct.

The PPIE group is made up of people who have first-hand experience of living with or supporting those who live with Lewy Body Dementia (LBD) and are based in both the UK and Australia. They meet regularly to hear updates and to offer any thoughts and are committed to the COBALT Trial. The PPIE members are people with an interest in supporting those living with dementia etc. but are not professionals. By asking for their views and ideas it is hoped that professionals will get a better insight into how ‘ordinary’ people understand the issues involved in the trial.

Former Carer for parent with DLB

Why do you think Patient and Public Involvement and Engagement is important?

So that healthcare professionals hear first-hand of people’s experience of using the various healthcare services.
To raise awareness and understanding of the challenges / problems encountered to then (hopefully) influence changes to address the root cause of the problems.

What difference do you feel Patient and Public Involvement and Engagement makes to research?

The experience, insight, ideas and knowledge that people bring helps to influence the research undertaken and improve the products and services available now and in the future. The ideal scenario being to find a cure for known conditions (like dementia) and help people live a longer and healthier life.

Why do you want to be involved as a member of the Patient and Public Involvement and Engagement group for this study?

My mum had Lewy Body Dementia (LBD), I was her carer and advocate for circa 12 years. I was provided with minimal information about the disease (by clinicians) and had to navigate the complexity of health and social care services with no support. Therefore, I wish to share my experience, insight, ideas and knowledge of LBD.

I also wish to continue to remain mentally active, by contributing to various projects, following retirement.

Carer for friend with dementia

Why do you think Patient and Public Involvement and Engagement is important?

Because medical professionals, like anyone who tends to work in a specialist field, may often not speak in "layman's terms", i.e.: language that is easily understood. Often, use of specialist terminology makes the subject seem distant, formal and incomprehensible.

What difference do you feel Patient and Public Involvement and Engagement makes to research?

Hopefully, we see things from a different perspective than someone involved within the project, and can either help to make things clearer or looked at in a different way.

Why do you want to be involved as a member of the Patient and Public Involvement and Engagement group for this study?

I have found it incredibly difficult to find out information about these illnesses, research that is being undertaken into them, how patients feel, the nature of the illness and how it changes, and how I should respond to people with these illnesses. In whatever small way, I am hoping to broaden my understanding of, and information about, them.

Carer for partner with Parkinson’s

Why do you think Patient and Public Involvement and Engagement is important?

Patient and Public Involvement & Engagement is important as it gives a platform for the people impacted by the heath condition to have a voice and be represented in the decision making process about care and treatments.

What difference do you feel Patient and Public Involvement and Engagement makes to research?

Patient and Public Involvement & Engagement can make a difference to research as it allows those living with the health condition to give an insiders perspective on what daily life is like living with the condition. This lived experience may present perspectives that may not have been thought about and can ensure that every opportunity is given to cover all aspects in the research.

Why do you want to be involved as a member of the Patient and Public Involvement and Engagement group for this study?

Personally my involvement in the PPIE will hopefully mean that people affected by this health condition may benefit from my personal carer experiences and insights so that their journey may be easier in the future. Involvement will also allow me to learn and have a better understanding of the condition and its associated treatment options.

In what ways have you benefitted from being involved?

Being involved in the PPIE has given me a sense of community and involvement as being part of a team with a common goal to help others. It is a great learning opportunity to observe the research process and share this experience with a supportive group of people. Being able to contribute and help is a rewarding feeling.

PPIE member with interest in dementia

Why do you want to be involved as a member of the Patient and Public Involvement and Engagement group for this study?

Public participation is important as some carers of patients who are already participating or even of non-participating patients would love to know more about the options available and if they really work. I have a strong family history of dementia and I feel that I will benefit from being part of the PPIE by becoming aware of the possibilities to treat dementia, understand more about the disease phases, share experience with other patients or carers, and play a role in helping researchers find a cure for this devastating disease.