Help guide research to improve informed decision making for people living with frailty & long-term conditions
This research project aims to create information materials that will help people living with frailty and long-term conditions in making decisions about how they would want to be cared for in the event of an acute health crisis. Acute health crises are those in which you may be so unwell that you potentially require an emergency admission to a hospital or the intensive care unit.
This is a co-design project which means the researchers will be working together with people living with long-term conditions, their families/carers and healthcare professionals to understand their experiences and to co-create the information materials.
We would like to invite up to 3 people with experience of frailty or long-term conditions (as a patient or carer/family member) to be part of an advisory group to guide this project. You will be working with other patient and public advisors and with the research team. We would like to draw on your thoughts and experiences to guide the project in order to ensure we produce something useful and meaningful to patients and their families.
We are interested in working with up to 3 people who:
- Live with frailty and/or long-term conditions
- Care for or support someone living with frailty and/or long-term
- Live or receive care in Northwest London
We particularly welcome expressions of interest from currently under-represented groups in research to ensure our group represents a diverse range of backgrounds (such as age, ethnicity, sexuality, religious belief).
What will I be asked to do?
You will be asked to take part in 5 advisory group meetings (online) over the next 18 months.
These meetings will be about an hour and involve the research team and other people living with long-term conditions or their families/carers.
As an advisory group member, you will be asked to offer your perspective as someone living with frailty and/or long-term conditions or as someone who cares for or has previously cared for a family member or friend living with frailty. You would provide feedback on things such as the development of the research; the ways of carrying out the project; and how findings can be put into practice.
Further details are provided in the role description attached at the of the page.
When and where?
The next meeting is planned for Thursday 8th July 16:00 and will take place online.
All interactions will take place online, so you will need access to a computer or smartphone, internet connection and an email address. If you have any accessibility requirements please do let us know by contacting Adam at [email protected] or specifying within the expression of interest form.
Will I get anything for taking part?
We will offer honorarium payment for your time involved in the project, as well as covering reasonable expenses incurred. Payment will be calculated according to 2020 NIHR Centre for Engagement and Dissemination reimbursement guidelines, which are available here.
Further details regarding payment, including tax implications is provided in recently updated NIHR guidance here.
How do I register my interest
Please register your interest by clicking on the button at the top right hand of the page. You will then be directed to a short form to complete asking you to briefly provide why you are interested in being involved in this project and how your experience meets the above criteria.
If you have any trouble accessing/completing the form please get in touch with Adam Lound at [email protected]
The deadline to apply is 5pm on the 23rd June 2021, all applications will be reviewed shortly after and we will be in touch regarding the outcome in early July at the latest.
Help guide research to improve informed decision making for people living with frailty & long-term conditions Discussion
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