Open Arms Project: Student Patient Alliance Expression of Interest Form
As part of the OPEN ARMS patient and public involvement group we are looking for people to become involved with Student Patient Alliance, a scheme which partners up research students with patients. We hope that these valuable collaborations will help researchers of the future to have a good understanding and appreciation for patient and public involvement in research.
The aim of the project is to build a relationship between and within patients and researchers. Are you interested in the Student Patient Alliance project?
What is the Kennedy Patient Partner Group (KPPG)?
OPEN ARMS is a group of people who are interested in arthritis and related conditions who inform and actively collaborate in research into inflammation conducted at the Kennedy Institute for Research in the University of Oxford. Our members advise our researchers about what research they should do, how they should go about it and how they can share it with the public.
OPEN ARMS supports future stars of rheumatology research!
We hope that our patient partners will really enjoy getting to know one or more of the student researchers in the Kennedy Research Group. Typical benefits for patient partners include:
1. Being a mentor to a research star of the future;
2. Supporting research to improve outcomes for rheumatology patients;
3. Learning in detail about a cutting edge rheumatology research project;
4. Payment of £25 per hour in shopping vouchers is offered for time spent on related activities.
Talking to patient partners helps student researchers learn:
1. About the disease that their research focuses on;
2. How their research might benefit patients;
3. How research benefits from patient involvement;
4. How to communicate with members of the public about their research.
Do I have to come to the University/Hospital?
As a result of the COVID-19 pandemic, for the time being all meetings between patient partners and our researchers are taking part via email, phone, post, or online, such as via Zoom.
When things have settled down, it may be possible in the future to arrange one or more face-to- face meetings with your student. This would be entirely up to you, and not at all necessary.
We will offer all OPEN ARMS volunteers the opportunity to attend an initial call via Zoom to find out more about the Student Patient Alliance, and meet the students involved.
How much time commitment does this involve?
That’s entirely up to you and your student partner. All patient involvement in our research is always voluntary. As a minimum, we expect a student would invite you to give feedback on a short summary of their research. Some students and patient partners enjoy meeting on a regular basis, to discuss their research progress and identify additional activities that patient partners could get involved in.
What can I expect?
We encourage students to explain their research to their patient partner and ask for their advice about how to describe their research to members of the public. This might involve having an informal chat, or commenting on a plain English summary of their research.
Some students have also worked with patient partners to create award-winning posters, presentations and exhibitions at science fairs. It is up to patient partners and students to decide together what they would like to achieve and how.
Patient partners have reported that they have enjoyed providing encouragement and advice to young students who are research novices, and perhaps living in Birmingham for the first time.
Do I need to have any qualifications?
No. You are welcome to get involved whatever your education or background. We value the expertise you have because of your experience as a patient, relative, or carer. Even if you have no experience of the relevant disease, you can still provide advice as a member of the public. It is important (and often very difficult!) for students to learn how to communicate about their research to members of the public. Providing them with feedback about how understandable and effective their communications are is extremely valuable, whether you are a patient or not.
Will I be paid?
You will be offered the option of £25 worth of shopping vouchers in compensation for your time for each hour spent collaborating with your student partner. Please note that the University of Oxford is not liable for any impact of such payment on tax or benefits status. Further advice on the implications of payment for patient involvement in research can be found here: https://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/
Any travel and parking expenses you may have will be refunded.
What if I change my mind?
That’s fine. You can withdraw from working with a student researcher at any time, without giving a reason. If something goes wrong, and you are unhappy with how things are going, you can either discuss this with your student partner in the first instance, or contact Louise Hailey openarms@ndorms.ox.ac.uk.
Who are we looking for?
We are currently only open to applications from those: over 18 years old, who have been diagnosed with inflammatory arthritis.
To apply:
If you are interested in becoming part of the Student Patient Alliance, please complete the Expression of Interest form. We will review all expression of interest forms and choose a range of people with inflammatory arthritis. We will get back to you as soon as possible.
Only members of the Project Team will have access to your contact information shared in the Expression of Interest. To find out more about how we will use your data, see our Student Patient Alliance Privacy Notice.