JIA VIP Panel: Information for families
The JIA VIP Research Panel is a unique opportunity for you to take part in research into Juvenile Idiopathic Arthritis (JIA). By taking part, you will make a difference to many different research projects, helping researchers and clinical teams understand more about JIA and how it affects you. Long-term, this will help lead to new and improved treatments, better support for you and your family, and more effective clinical care.
How do I join the JIA VIP Panel?
If you previously received A Little Box Of Hope support pack from us before the launch of the JIA VIP Panel, we will send you a link inviting you to join the JIA VIP Panel. If you haven’t received the link, please contact us and we can re-send it.
If you have not received A Little Box Of Hope from us, or receive it from September 2023 onwards, you may still be eligible to join. Click here and complete the short application form.
Who can join the JIA VIP Panel?
Anyone aged over 18 in the UK who is a parent/carer of a child or young person with JIA, or an adult (aged 16+) in the UK with a diagnosis of JIA. At the current time, we are only recruiting for the UK JIA VIP Panel.
Is it free to join the JIA VIP Panel?
Yes! Joining the JIA VIP Panel is completely free.
Some of the benefits of joining the JIA VIP Panel include:
Exclusive JIA VIP Panel Rewards
At Juvenile Arthritis Research we believe that everyone with JIA and their families matter. Your time is valuable and your experiences of living with JIA are vital for research to continue. We also know that your time is precious. Which is why we have introduced JIA VIP Panel rewards! Rewards will include exclusive prize draws for Panel members only.
When we run a larger survey on behalf of a research team we will ask them to contribute towards the rewards scheme. For interviews, focus groups or other in-depth work we expect researchers to reimburse our JIA VIP Panel members who are selected to take part in each specific project at the current national rates. You will be told about reimbursement and rewards prior to each opportunity to take part.
Reduced burden
Your time really is important. And we know it is frustrating when every survey you complete asks for the same information again and again. Sometimes researchers need to know about changes over time, but often the same basic information gets asked by every research study because they don’t have access to it in any other way. By joining the JIA VIP Panel, you only need to provide that information once, and we link it anonymously to each question set. For example, you only need to give your date of birth once and we can calculate your age band at each survey – we don’t need to ask every time. Sometimes external studies may need to ask the same questions, but overall the burden on your time will reduce.
The JIA VIP Panel also reduces the burden on your time by making sure you only receive high-quality research questionnaires. Too often, we have seen poorly designed questionnaires that will not provide any new information or improve things for families with JIA. We won’t share those questionnaires to the JIA VIP Panel, meaning you can rest assured every question you answer is worth us asking, and you won’t waste your time looking through surveys that are not useful.
Your information will be used appropriately
The JIA VIP Panel members will only be sent high-quality research surveys and opportunities that will make a difference. Your information will be kept secure and your answers to surveys and questionnaires will be kept anonymous. We know some organisations in the past have used ‘research’ as a way to create mailing lists or generate donations – the JIA VIP Panel will not do that, and we will only use your information to support research and in specific ways that you give consent to (for example, if you are interested in joining a discussion about a project, you will be asked to give consent for your details to be shared for that project with the researchers involved).
Access to a broad range of opportunities
The JIA VIP Panel is more than just completing surveys – there are lots of opportunities to get involved in research! Researchers today have recognised the value of involving patients and families early on in their studies and throughout the research project. Where families get involved in designing a study, contributing to project discussions, helping shape the project or understand and interpret the results, it is called ‘PPIE’ (Patient and Public Involvement and Engagement). Traditionally this has been limited to a small group of individuals, but at Juvenile Arthritis Research we believe that everyone affected by JIA has valuable experiences that can benefit researchers. Working with research teams, we will offer these opportunities to our JIA VIP Panel. Often no formal experience is needed, as the best research teams will support you completely – all you need is your experiences of JIA, and a commitment to help in the project. Opportunities range from taking part in a one-off focus group through to being part of the official project team, and from proofreading documents to make sure they are clear, through to presenting results with the researchers. You never have to do anything you don’t want to, and will be supported by the team throughout. We ask researchers that everyone who takes part in all of these PPIE activities should be reimbursed, to reflect the value you are bringing to the project.
There are also benefits to the researchers, helping them to deliver research more quickly, with a group of families who are already interested and engaged in JIA research. Overall, the JIA VIP Panel will help improve the quality of research that takes place.
Frequently asked questions
How do I join the JIA VIP Panel?
If you have received A Little Box Of Hope support pack from us before September 2023 we will send you a link inviting you to join the JIA VIP Panel. If you haven’t received the link, please contact us and we can re-send it.
If you have not received A Little Box Of Hope from us, or receive one after September 2023, you may still be eligible to join. Click here and complete the short application form.
Who is able to join the JIA VIP Panel?
Anyone aged over 18 in the UK who is a parent/carer of a child or young person with JIA, or an adult (aged 16+) in the UK with a diagnosis of JIA. At the current time, we are only recruiting for the UK JIA VIP Panel. We reserve the right to ask to see a copy of your diagnosis letter or a clinic letter to confirm eligibility; this would be used only to confirm eligibility and then destroyed.
What does being on the JIA VIP Panel involve?
When you first join the JIA VIP Panel you will be asked to complete a short questionnaire about you, your child and their JIA diagnosis. We will then send surveys and questionnaires out to you on a regular basis, and invite you to complete them. Those taking part will be eligible for the exclusive rewards such as prize draws.
From time-to-time there may be opportunities to take part in other types of projects. For example, sometimes researchers will want a parent of a child with JIA to join their group to help develop the research project or to contribute to a discussion (focus group). Members of the JIA VIP Panel will be invited to take part in these activities, too. We will try to take into consideration to have a fair balance of people who have taken part before and those who have not. We will also be available throughout the project to ensure you are supported by any external research team.
What about the JIA VIP Panel Rewards?
At Juvenile Arthritis Research we believe that everyone with JIA and their families matter. Your time is valuable and your experiences of living with JIA are vital for research to continue. We also know that your time is precious. Which is why we have introduced JIA VIP Panel rewards! Rewards will include exclusive prize draws for Panel members only.
When we run a larger survey on behalf of a research team we will ask them to contribute towards the rewards scheme. For interviews, focus groups or other in-depth work we expect researchers to reimburse our JIA VIP Panel members who are selected to take part in each specific project at the current national rates. You will be told about reimbursement and rewards prior to each opportunity to take part.
Why should focus group members be paid?
Patients and parents are vital to ongoing research into JIA. Everyone else involved in a research project is paid to be there, and we believe it is important that you are also reimbursed for your time. We know this makes being part of a research project accessible to you, and recognises that your views really do matter. We have been pushing for properly funded patient involvement work since we were founded as a charity, and the JIA VIP Panel is one way we can make sure it happens.
Will my information remain confidential?
Yes. The personal information you provide as part of the JIA VIP Panel will remain confidential. When you take part in a survey for another organisation through the JIA VIP Panel, you will be asked to give consent before we share any information with them.
What about clinical trials?
Clinical trials are studies that are based in hospitals, clinics and research centres. They work with patients within the setting, usually to test new medications or treatments, or to monitor new ways of assessment. The JIA VIP Panel is not directly linked to those studies, as only your doctor or clinical team can invite you to take part in them. However, hospitals and clinical teams may ask us to make Panel members aware of certain clinical trials taking place.
What about other surveys and research?
One of the benefits of the JIA VIP Panel is that we can help maintain high-quality research standards. There will always be other research projects that take place from other organisations, which we cannot be certain of the quality or the value of the project. If you wish to take part in them, you may but please note that you would not get the same benefits from those projects as do from being part of the JIA VIP Panel – so you might have to provide the same information twice, may not be reimbursed for your time, and will not earn JIA VIP Panel rewards for those surveys.