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Institute of Epidemiology and Health Care Blog



Archive for September, 2019

Dementia research behind the Scenes: Experience of an A-level student in an academic department

By guest blogger, on 30 September 2019

We have a fantastic post below from Vennie an A-level student aspiring to study Medicine at university. She visited the Research Department of Primary Care and  and shadowed some of our academics in their various projects in July. In this post talks about her experience and what she took away from it. 

Dementia is an increasing problem especially with the growing older population in the UK. The awareness of dementia is rising, especially through the use of media and organised events such as Memory Walks. However, how much do we know about dementia?

Well, in simple words, dementia is the ongoing decline in the brain. This is only an umbrella term for 200+ different sub-types of dementia that exists, some of which you may have heard off. For example the most common two are Alzheimer’s disease and vascular dementia.

During my placement in the Research Department of Primary Care and Population Health at the Royal Free Hospital, I was able to shadow members of the team that are involved at different levels of research projects.

I discovered that there are many stages which make up the process of a research project. Starting with the planning and design of the research project, ethics, and recruitment through to finally analysing and presenting the results produced. Alongside all this and integrated throughout are processes to ensure the results are implemented into clinical practice and policy, to make a difference. I learnt about the different types of studies such as qualitative studies and large clinical trials. Due to the involvement of human participants including often patients from the NHS in the studies the department runs, a major part of the research process is the ethical application and review. The purpose of the review is to establish if the project has more benefit than risk to the person and their family as well as is the project being conducted sensitively. For all of this to happen, it may take 5 to 20 years to see a difference in practice and policy.

In order for, this project to be successful, a range of people are required to take part, which in turns bring a variety of skills into the mix. These individuals may include designers, programmers, clinicians, psychologists, sociologists, statisticians, qualitative researchers, and importantly patients and their family themselves. A few of the most prominent skills are communication, teamwork, determination and resilience. For example, a project with Dr Davies and Prof Rait I observed on producing a support package for people with dementia and their families, communication has a massive role to play. The project uses workshops with people with dementia, their family and professionals to develop the support package. There is a need for clear communication between the ranges of people for this project to progress smoothly. The communication may come in the form of discussion-based in meetings, emails and many other ways. Therefore, teamwork is essential as each person will have a special role in the project. Finally, determination and resilience are required from every member of the team as there will be challenges along the way, which could be out of your control that must be overcome. For example, if the project does not meet the criteria of the ethics committee it may be returned to the researcher, and his or her team must go back and amend the plan.

In conclusion, research of any kind similar to this project requires a range of people to be involved with a variety of skills that are vital for the research to work. This work experience has been a fascinating and exciting opportunity for me to experience what goes on behind the scenes of a research project.

What makes an ideal Patient and Public involvement (PPI) panel?

By guest blogger, on 5 September 2019

Authors: Aradhna Kaushal, John Isitt, Christian von Wagner, Douglas Lewins and Stephen Duffy

The Policy Research Unit (PRU) in Cancer Awareness, Screening and Early Diagnosis recently set up a Research Advisory Panel to ensure that its research programme is relevant to and reflects the perspectives of patients and the public. In May, we ran a co-creation workshop designed to help the research advisory panel and PRU staff to build relationships with each other, to share ideas and experiences, to understand different perspectives, and to discover and prioritise discoveries together. The culmination of the workshop was the creation of a manifesto for the development of the Research Advisory Panel.

What did we do?

On the 31st of May we ran a co-creation workshop bringing together newly appointed patient and public members, with academics and administrators – to co-create the Research Advisory Panel’s (RAP) purpose, structure and culture to answer the challenge:

“What would the ideal Research Advisory Panel look like? What should it be responsible for? What’s the best way to involve PPI members effectively with academics and administrators? And how should it be organised?”

Co-creation in healthcare research, sometimes referred to as co-production, is “an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge” (NIHR, 2018). This approach is important in healthcare research as those affected by research are in an ideal position to contribute to the design and delivery of research through their unique experiences and knowledge.

The group was made up of nine patient and public involvement (PPI) members, four academic staff from the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis (PRU), the administrator who supports the PRU, and the PRU’s director. Everyone participated equally in the workshop to co-create what an ideal Research Advisory Panel for the PRU would be like and how best to support and integrate PPI members.

What did we find?

In the first half of the workshop, recognising the differences in experience and diversity of the group, attention was given to create relationships, safety, permission and tools for sharing our personal experiences of PPI – the good, the bad and the ugly – and identified a range of attributes and obstacles to PPI in research. We discussed the importance of developing good relationships between PPI members, researchers and clinicians, and creating a positive environment for us to work together.

“As a new PPI member, you’re thrust into the midst of academics, physicians, etc and expected to make conversation over coffee. This can be a big obstacle for some people. They can be totally phased by the social demands.”

“Researchers tend to operate in cliques outside the meeting. [We] need to identify training for researchers to approach us as well as us approaching them.”

“If it really is about being a tick box, now I walk away. I’m not going to be complicit with that kind of game play. If I’m in the room, then accept me being in the room. You might not like everything that I say and that’s allowed, but please don’t have me here as a hologram.”

We then worked in small groups to create the future, writing manifestos for the ideal RAP in terms of purpose, culture and structure, which we presented back to the workshop. The main proposals are summarised below.

What happens next?

The insights from this workshop will be used to guide the future working relationships of the research advisory panel of the PRU. We are currently adopting the manifesto into our current terms of reference and way of working. We also have exciting plans ahead setting up a training and development plan for PPI members and virtual space where they can keep in touch with each other.

For anyone interested in running a similar workshop, please contact Partners in Creation.