Brain Research Trust: patient and carer discussion group

Additional information for people interested in taking part

What is this about?

Brain Research Trust is holding a discussion group for up to eight patients and carers with experience of neurological conditions. This will take place in central London on Wednesday 14 October 2015, between 10:30am and 12:30pm, followed by lunch.

We are currently developing a new research strategy. The purpose of the group discussion is to find out what you think of our new research strategy and to understand what research is important to you. We would also like to understand what you think we should be doing to continue to involve people like you in our work.

Who is being asked to take part?

Up to eight patients and carers with experience of any of the following conditions:

  • Alzheimer’s Disease and other dementias
  • Brain Tumours
  • Epilepsy
  • Multiple Sclerosis
  • Motor Neurone Disease
  • Parkinson’s
  • Stroke

Do I need any particular skills or knowledge to participate?

We are looking for people who are willing to talk about their views and experiences, and to listen to other people’s. You do not need to know about clinical research or trials. Previous experience of Patient and Public Involvement (PPI) may be helpful, but is not essential.

What will happen at the discussion group?

The group will start with a short presentation from Brain Research Trust, to explain the purpose of the research strategy. Up to eight patients and carers will then sit around a table for a discussion that will be led by an independent facilitator, Katherine Cowan. The discussion will be recorded. It will last for 90 minutes and will be followed by lunch. Refreshments will be available throughout.

As well as the participants and the facilitator, there will be a few people from Brain Research Trust to help organise and to observe the process.

Before the meeting, you will be sent a summary of our new research strategy. You will be asked to read this as we will be discussing it as a group.

The discussion will take place a venue with disabled access and facilities. Your expenses will be covered and you will receive £50 as a thank you for taking part. We wish to ensure that we hear from any person affected by brain disease regardless of their own personal financial circumstances which is why we make this offer.

What will happen after the discussion group?

After the discussion, Katherine will write a report for us. This will include recommendations that reflect your input for our research strategy and for how we can continue to involve patients and carers in our work. No names or identifying details will be included in the report – your participation will remain confidential.

What do I do now?

If you are interested in taking part, please send your details, including your experience and interest in the topic to

If you would like more information before deciding to take part, please contact Mira on 02074920395, or