Wellbeing in mutation driven lung cancer
We’re looking for people to help us shape the future direction of the wellbeing support offered to mutation-driven lung cancer patients and their loved ones. By ‘mutation-driven’, we mean those such as EGFR, ALK, ROS1, KRAS etc.
Before you decide whether you would like to take part in this research project, we want you to understand why it is being done and what it would involve for you. Please take time to read the following information carefully and discuss it with others if you wish.
If, after reading the information sheet, you would like to take part in this research, please complete the consent form below before the research activities begin.
Who can take part?
You can take part if you:
- have been diagnosed with a mutation driven lung cancer; or are the loved one of a person who has
- are aged over 18 years old
- live in the UK
What is the purpose of this research?
Being diagnosed with a mutation driven lung cancer can be incredibly stressful and overwhelming. However, there is very little research into the wellbeing needs for this patient group. As such, researchers at the Open University have partnered with the Ruth Strauss Foundation (supported by ALK Positive UK and EGFR+ UK) to find out more about patient experiences, so we can provide better support to patients after diagnosis. We also want to explore the possibility of developing an online support program or resource, dedicated to lung cancer patients.
To do this, we want to talk to patients and their families to explore several questions around wellbeing and support. We will be doing this as part of a free Wellbeing and Research Event, which will offer several other activities and opportunities on the day, including:
- Meeting others going through a similar experience
- Hearing talks from experts in the fields of wellbeing and lung cancer
- Finding out information about current and future developments in the treatment of mutation driven lung cancers
What does the research involve?
The research will take place at two Wellbeing and Research Events on:
- November 18th 2023 in London
- March 16th 2024 in Manchester
At each event, we will be running two different research activities:
Focus groups: A one-hour focus group discussion, exploring your experiences with wellbeing since diagnosis, the support you received (if any) and the support opportunities that you wish were available, but are not. These focus groups are also an opportunity to meet other patients going through a similar journey, and share your experiences (which can often be really beneficial).
Table-top group activity: A one-hour group discussion activity that will take place at tables, and explore the possible development of an online, support program for lung cancer patients.
You are invited to take part in a both activities (although participation is entirely voluntary).
Compensation
If you take part in the research activities (whether one, or both) we will offer you a £20 gift voucher to compensate you for your time. You will also be reimbursed for your travel costs as part of the wider event (whether you travelled via car or public transport).
As these research activities are taking place at a full day Wellbeing and Research Event, you will also be offered refreshments and food (e.g. drinks, snacks, lunch and afternoon tea) throughout the day.
Privacy policy
All information collected during this research will be made anonymous, by removing any identifying information from the responses you give. You will not be identified in any report or publication resulting from this research.
Your contribution will be used for research purposes only and no personal information will be passed to anyone outside the research team. Your participation will be treated in strict confidence in accordance with the Data Protection Act (2018).
We also ask that you keep the information discussed in these research activities confidential.
How will the information collected by the research be used?
To make sure the researchers don’t miss any important information discussed in the focus group and table-top activities, these sessions will be audio recorded, and then transcribed for analysis. Once transcribed, the audio recording will be permanently deleted, and the transcriptions will be anonymised to removed any mentions of names or identifying information.
These transcriptions, along with any other information collected during the research, will be stored on a secured, encrypted server. All information collected will be anonymous, and only anonymised quotes and summaries of the themes discussed will be reported. Overall research findings will be shared with the Ruth Strauss Foundation (in the form of a charity report), to help shape their support offerings for mutation-driven lung cancer patients.
An anonymised summary of the overall research findings will be available to you at the end of the research (by April 2024). If you would like a copy of this, please indicate this on the consent form.
The anonymised information collected as part of this research will also be deposited in a specialist data centre, so it can be used for future research and learning.
Voluntary participation
Taking part in this research is entirely voluntary. If you decide to take part, you are free to withdraw at any time without having to give a reason and without negative consequence. For example, you do not have to respond to any question if you don’t want to, and you are free to leave the research sessions at any time.
If you change your mind and would like to withdraw your contributions to the focus group or table top session after the event day please contact gini.harrison@open.ac.uk by 16th April 2024.