Understanding what information people affected by MND think should be collected by research teams
Many research teams around the UK and the world collect information about MND. Often, they collect different information and in different ways. This makes it difficult to combine information from different studies.
The researchers would like to identify important information that all research teams should collect. They have spoken to doctors and specialist nurses who work with people affected by MND. They would now like to hear directly from people living with MND and their carers.
They would like people affected by MND to take part in a group discussion. Everyone will be given an equal opportunity to share their views and help the group to reach an agreement on the key information which should be collected by research teams.
How will this study help people with and affected by MND now and/or in the future?
The researchers hope that this study will provide a standard set of information which should be collected by MND research teams. This will mean that information from different studies can be combined, so researchers can learn more from large numbers of people with MND.
Taking Part
What does taking part involve?
People who take part will be asked to attend a focus group meeting, either in person (for people who live locally to Lancaster) or online. During the meeting, you will be asked to share your views on the following question:
“What information about you and your MND do you think it is most important for researchers to collect?”
The meeting will be run using a structured discussion method designed to make sure everyone has an equal opportunity to contribute. The session will include the following stages:
1) Introduction: The facilitator will explain the purpose of the meeting and what will happen during the session.
2) Quiet thinking time: You will be given time to think privately about the question and note down your ideas.
3) Sharing ideas: Participants will be invited, in turn, to share their ideas with the group. All suggestions will be recorded exactly as they are given.
4) Group discussion: The group will discuss the ideas that have been shared. This allows participants to clarify what they mean and to identify ideas that are similar or overlap.
5) Prioritising: You will be asked to help rank the ideas according to how important you think they are. This will be done using a simple voting system.
The aim of this process is to identify which types of information are considered most important by people living with MND and their caregivers. There are no right or wrong answers, and you are free to share as much or as little as you feel comfortable with.
Who can take part?
People living with MND and their caregivers.
How can I take part?
For further information or to take part in the study, please contact: Dr Laura White at Laura.white19@doctors.org.uk
Study locations
UK-wide
Funding
This study is funded by Faculty of Health and Medicine, Lancaster University