For people living with AiArthritis diseases and those still looking for a diagnosis
Share Your Experience
What you’ve lived through counts.
If you’re still looking for a diagnosis, what you’ve lived through counts too.
Share your experience of living with autoimmune and autoinflammatory arthritis (AiArthritis) diseases in writing, as a voice message or as a video. It goes into the guides, pages and classes that patients help build with AiArthritis.
You have learned things about living with an AiArthritis
disease that are not written down anywhere, such as how long it took before anyone named what was happening,
what it took to get a treatment covered,
and what finally made a difference.
Right now the only place that knowledge exists is with you.
Who we are
AiArthritis is led by people living with AiArthritis diseases. Our work is peer-led, so what you tell us shapes the next guide, the next survey and the next podcast episode.
Why does your experience matter?
Often, decisions about AiArthritis diseases get made by people who do not live with one. What you have been through may not be accounted for, and we know that needs to change.
Your experience can help inform decisions about AiArthritis diseases.
Key takeaways
- AiArthritis takes experiences in writing, as a voice message, or as a video of up to five minutes.
- When you share your experience with AiArthritis, you answer only the parts you want to and choose whether your own name is used or you stay anonymous.
- Experiences shared with AiArthritis go into the guides, pages and classes patients help build, so the next person facing what you faced finds the answer already written down.
How can you share your experience?
There are three ways to share your experience with us. Use whichever is easiest for you.
Write it
Type as much or as little as you want
Record a voice message
Say it out loud instead of typing
Record a video
Up to five minutes, straight from your browser
What do you decide?
You decide three things when you share your experience with AiArthritis.
How much you answer
Answer the parts you want to and leave the rest
Whether your own name is used
Your own name, or anonymous. You choose this on the form
How you share it
Writing, a voice message or a video, whichever is easiest
What does the form ask?
The form for sharing your experience asks for your contact details and your experience, asks four questions you answer with a rating, and asks whether you want your own name used or want to stay anonymous.
The form has space for how long your diagnosis took, what was dismissed along the way, what getting and paying for treatment has been like, how your appointments go, and what has actually helped.
If the form for sharing your experience does not load, open the form on its own page.
If the form is hard to use, email your experience to araiah@aiarthritis.org instead.
Not ready to share yet?
The AiArthritis Voices Newsletter sends patient-created resources and news of our work to your inbox.
What happens to what you share?
What you share can move through the seven steps of AiArthritis Voices, the way patients take part in the work of AiArthritis, from the first thing you tell us to a solution in use.
-
1. Voice
Tell us what matters.
-
2. Identify
Find the issues that need solving.
-
3. Discover
Find what already exists.
-
4. Explore
Bring the right voices to our table.
-
5. Co-create
Turn insights into solutions.
-
6. Evaluate
Make it better.
-
7. Impact
Put solutions to work and measure the difference.
After the seventh step we keep listening, because what you and others tell us next shapes the next version of each solution.
What happens at each step
1. Voice
You share your experiences, needs and challenges with us, and we listen wherever our community is talking.
2. Identify
We look across everything people share with us for patterns, and for the issues patients raise that need attention most.
3. Discover
Before building anything, we look for resources that already exist on the issue patients raised, so we build on what works, fill what is missing or create something new instead of repeating work.
4. Explore
We bring more patients into the conversation about the issue being worked on and, when it helps, other experts whose knowledge adds to ours.
5. Co-create
Patients and the experts we invite in shape the solution together, whether it is a resource, guidance, a tool, a program or an initiative.
6. Evaluate
We bring the solution back to the community, hear what works and what doesn't, and improve it.
7. Impact
We put the solution to work, and measure how people use it and what difference it makes in their lives.
What comes out of the seven steps of AiArthritis Voices goes to two places.
The first is the next person living with an AiArthritis disease, who starts with what you and others worked out.
The second is the researchers, clinicians and policymakers we invite to our table, who find evidence from many of us at once that something has been missing from how AiArthritis diseases are researched and treated.
If you also join AiArthritis Voices, you can be invited into the steps that need patients most: exploring an issue, co-creating the solution and evaluating it.
Where your experience goes
Into the next guide, the next page, the next class.
How can you take part in the work of AiArthritis?
You can take part through AiArthritis Voices. Patients who join can be invited to take a survey or poll, join a discussion, help explore an issue, advise on or co-create a solution, evaluate what has been built, and serve on advisory panels, some of which are paid.
You do not have to join AiArthritis Voices for your experience to count. Joining keeps you connected to patient-led resources from other patients like you, and to the surveys, discussions and projects that fit what you have lived through.
