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What is Ai Arthritis Voices?
Ai Arthritis Voices is how people living with autoimmune and autoinflammatory arthritis ( Ai Arthritis ) diseases decide what Ai Arthritis works on and shape how the work gets done.
Joining Ai Arthritis Voices is free and lets us invite you to surveys, discussions and patient-led projects that fit your experience. You choose each time whether to take part.
If you have ever answered one of our questions on social media, shared an experience on our podcast or taken one of our surveys, you are already part of Ai Arthritis Voices, even if you never joined.
The Ai Arthritis Voices Newsletter sends patient-created resources and news of our work to your inbox – and you don't need to join Ai Arthritis Voices to get it.
Who we are
Ai Arthritis is led by people living with Ai Arthritis diseases, so our work starts with peers listening to peers. Many voices contribute, and patient lived experience leads.
Why is Ai Arthritis Voices led by patients?
Ai Arthritis Voices is led by patients because decisions about Ai Arthritis diseases are often made without the people who live with them.
Key takeaways
- Ai Arthritis Voices is how people living with Ai Arthritis diseases decide what Ai Arthritis works on and shape how the work gets done.
- Nobody has to join Ai Arthritis Voices for their voice to count, because answering a question on social media, sharing an experience on the podcast or taking a survey already makes them part of Ai Arthritis Voices.
- Every experience shared with Ai Arthritis can move through seven steps, from telling us what matters to measuring the difference a solution makes, and then we keep listening.
- Joining Ai Arthritis Voices is free, takes a few minutes and carries no ongoing commitment.
Living with an Ai Arthritis disease gives you lived experience, the day to day knowledge of what the disease is really like, and that makes you expert in it the same way research makes someone expert in their field.
The expertise of people living with Ai Arthritis diseases has often been missing from the conversations that shape care, coverage and research. Through Ai Arthritis Voices we host those conversations ourselves, because as people living with Ai Arthritis diseases we hold the knowledge that has been missing from them.
Ai Arthritis Voices is our table. Researchers, clinicians and policymakers are welcome at it, and we invite them in when their expertise helps.
On its own, one experience is easy to set aside. Enough experiences together become evidence, and evidence is what guides the people who decide how Ai Arthritis diseases are researched and treated.
You don't have to join for your voice to count.
Joining Ai Arthritis Voices lets us come back to you when a survey, discussion or project opens up that fits what you've lived through.
What happens to what you share?
What you share with Ai Arthritis can move through seven steps, from the first thing you tell us to a fact sheet, a guide or a class people are using.
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1. Voice
Tell us what matters.
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2. Identify
Find the issues that need solving.
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3. Discover
Find what already exists.
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4. Explore
Bring the right voices to our table.
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5. Co-create
Turn insights into solutions.
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6. Evaluate
Make it better.
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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 Ai Arthritis Voices goes to two places.
The first is the next person living with an Ai Arthritis 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 Ai Arthritis diseases are researched and treated.
Why it matters
What you've lived through is the expertise the conversation has been missing.
Am I already part of Ai Arthritis Voices?
You may already be part of Ai Arthritis Voices without having joined.
If you have done any of these, your voice is already part of Ai Arthritis Voices:
- Answered a question we asked on social media
- Shared an experience on our podcast
- Taken one of our surveys or polls
- Taken part in one of our conversations or events
What does joining Ai Arthritis Voices do?
Joining Ai Arthritis Voices lets us come back to you. When you join, we learn a little about you, the perspective you bring and what matters to you, so that when something opens up around an issue you care about, we can invite you to it.
You choose when you take part and how much, and there is no ongoing commitment. Joining is free and takes a few minutes.
You can add your voice without joining, by answering a question on social media, sharing an experience on our podcast or taking a survey. Joining Ai Arthritis Voices helps us keep your voice connected to the work.
Share your experience
Tell us about something you've lived through, in writing or by recording it.
Take a quick survey or poll
A survey or poll asks a few questions on one topic.
Join a discussion
A discussion is a conversation with other patients about one issue.
Help explore an issue
Add what you know while we look more closely at an issue patients have raised.
Advise on or co-create a solution
Help shape a resource, guide, tool or program as someone who lives with an Ai Arthritis disease.
Evaluate what we have built
Tell us whether something we built works for you, and what to improve.
Serve on an advisory panel
Some of the panels we can connect you to are paid.
Who takes part in Ai Arthritis Voices?
Patients lead Ai Arthritis Voices, and patient-led doesn't mean patient-only. Parents, guardians, caregivers, family and friends can join too, and we invite other experts in when their expertise helps us understand an issue or build a stronger solution.
People diagnosed with an Ai Arthritis disease
Patient lived experience leads every step.
People who suspect they have an Ai Arthritis disease and are not yet diagnosed
What the wait for a diagnosis is like belongs in the work as much as life after one.
Parents and guardians of children with Ai Arthritis diseases
Parents and guardians speak to what they see at home and at their child's appointments.
Caregivers, family members and friends
Caregivers, family and friends bring what living with Ai Arthritis diseases looks like from the support side.
Health professionals, researchers, academics and policymakers
Health professionals, researchers, academics and policymakers take part by invitation, adding professional knowledge to what patients know.
How is Ai Arthritis Voices different from volunteering?
Ai Arthritis Voices is how you have a voice in what we do and how we do it. Volunteering is how you help us do the work.
Ai Arthritis Voices
What it is
Your say in what we work on and how we do it.
What you do
Say what needs solving, share your experience, take part in a discussion, co-create a solution and tell us whether it works for you.
Commitment
None ongoing. You choose each time.
Volunteering
What it is
Your help doing the work.
What you do
Bring more people into the conversation, organize or moderate discussions, help with production, translation, proofreading or project management, and help evaluate what we have built.
Commitment
A role Ai Arthritis depends on.
Volunteers take part in Ai Arthritis Voices first, so every volunteer also has a say in what we work on.
Some people start by adding their voice, go on to co-create something, and later decide they want to help carry the work out. That is often when volunteering begins.
Where did Ai Arthritis Voices come from?
In September 2020, on episode 45 of the Ai Arthritis Voices 360 Podcast, our founder Tiffany Westrich-Robertson described the people involved in any problem as marbles in a jar, with each group a different color. If only one color is in the jar, the solutions only work for that one group.
From that episode on, the show and the online Ai Arthritis Voices platform were open to every group involved in a problem, from family to doctors to researchers, with patients still leading.
What else do people ask about Ai Arthritis Voices?
Do I have to join Ai Arthritis Voices to share an experience?
No. Anyone can share an experience with Ai Arthritis , in writing or by recording it, with or without their name.
Joining Ai Arthritis Voices is a separate step from sharing. It lets Ai Arthritis come back to you with invitations that fit what matters to you, such as a survey, a discussion or helping build a new resource.
What is the difference between joining Ai Arthritis Voices and the Ai Arthritis Voices Newsletter?
The Ai Arthritis Voices Newsletter is email from us, with patient-created resources, news of what we are working on and ways to get involved when you want to.
Joining Ai Arthritis Voices tells us about your experience and what matters to you, so we can invite you to surveys, discussions and patient-led projects that fit. You can do either, or both.
Does joining Ai Arthritis Voices cost anything or commit me to anything?
Joining Ai Arthritis Voices is free and takes a few minutes, and there is no ongoing commitment. You choose when you take part and how much, so you can join and still decide each time whether an invitation fits what you have the energy for.
Who can join Ai Arthritis Voices?
People diagnosed with an Ai Arthritis disease can join, and they lead Ai Arthritis Voices.
People who suspect they have an Ai Arthritis disease and are not yet diagnosed, parents and guardians of children with Ai Arthritis diseases, caregivers, family and friends can all join. Health professionals, researchers and policymakers are invited in when their expertise helps.
Are any Ai Arthritis Voices opportunities paid?
Some are. Among the opportunities Ai Arthritis can connect participants to are advisory panels, and some of those panels are paid.
Joining Ai Arthritis Voices is how we can let you know when an advisory panel opens up that fits what you've lived through. Joining itself is free, and there is no ongoing commitment.
Ready to join Ai Arthritis Voices?
Joining Ai Arthritis Voices is free and takes a few minutes.
When a survey, discussion or project opens up that fits what you've lived through, we can invite you to it, so the next person facing the same thing starts with what you helped work out.
If you would rather hear from us first, the Ai Arthritis Voices Newsletter sends patient-created resources and news of our work to your inbox.