Negative feelings
Positive feelings
-2 Completely disengaged
-1 Minimally engaged
0 Neutral level of engagement
1 Moderately engaged
2 Fully engaged
Why only patients?
Even though the second phase of research was specifically designed to engage more researchers and providers by using a survey, the return rate was low. Only two participants from the first phase and one new researcher who responded to the recruitment emails actually completed the survey. Out of the researchers who responded to my emails, 21 expressed interest but did not fill out the survey. Two individuals were willing to talk to me and provided feedback after viewing the survey videos. Unfortunately, due to IRB requirements and their not signing the consent form, I cannot include their feedback in my research.
Recruitment for second phase survey - providers and researchers/ innovators
Recruitment for second phase survey - patients
74<
total
participants
Participants’ demographic
L
o
n
g
c
o
v
i
d
T
y
p
e
2
d
i
a
b
e
t
e
s
Type 1 diabetes
Caregivers
18-24
2
5
-
3
4
3
5
-
4
4
45-54
5
5
-
6
4
6
5
-
7
4
F
e
m
a
l
e
M
a
l
e
N
o
n
-
b
i
n
a
r
y
95
N
o
n
-
b
i
n
a
r
y
Research participation history
82%
has participated in research before.
Surveys
are the most common research format.
No Compensation
was provided for most of their research participation.
Reason for research participation
Help themselves and others like them | To come up with new ideas |Collaborating with providers and researchers | To support diversity
88%
has participated as a subject in research.
Would they be willing to use and engage with a platform like Storify (provotype)?
Because only 10 percent of people said it is unlikely they would use the provotype
When asked whether to keep or remove different features, almost all features were preferred to be kept
And of course comment like this
Yes,
A central hub for both commiserating with other long-COVID people, AND a collection of research studies? All in one place?? If this wasn’t an online survey and a Professional Science Environment I would be hugging you and probably crying a little bit.
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It’s incredible to feel heard and to be able to be a part of the process.
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Why would people living with long covid and/or diabetes like the provotype?
It’s been really frustrating to try to figure this all out on my own & I’m grateful that what you’re doing here is the most comprehensive effort I’ve seen yet & seems likely to facilitate real collaboration - and answers. Thank you!
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Feel Validated and Heard by Sharing Experiences
Research Related and Being Part of the Process
I like the idea about seeing updates on studies, because many times after participation the results are not shared directly with participants.
This makes research relevant, meaningful, reasonable. I would feel connected to researchers.
Compensation
I like the idea about seeing updates on studies, because many times after participation the results are not shared directly with participants.
It's user friendly, I get to share and listen to people's stories and get paid for my story and opinions.
Find Potential Solutions
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Time, Security, and Usability
also be toxic—people overstepping boundaries in terms of medical advice, dominating the space out of their loneliness or desperation, spreading misinformation or just general bitterness about the medical system, and so on.
The community that grows in patient forums can
Worried that the info will be used in nefarious ways.
Just not certain of time involved and security of personal information.
One of the symptoms many of us experience is 'brain fog' - jumping into another new app with its own quirks and user experience is not easy, so I won't do it unless I really have to.
Why would people living with long covid and/or diabetes not like the provotype?
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If they were to design a feature, what would it be?
Resources tailored to the person sharing their story with 2 or 3 providers that the patient could contact personally.
Based on the shared studies design a study to address our needs and challenges
Provide research studies that match story post.
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Live Chat Room, where people can connect live and talk about their experiences with one another, in a safe environment. It would be super nice if doctors and researchers could also listen in to learn about our experiences and what really needs to be researched.
Resources tailored to the person sharing their story with 2 or 3 providers that the patient could contact personally.
Communicating directly with researchers (e.g., asking clarification questions on studies).
Research early data. While this can lead to erroneous conclusions it is better than waiting many months for the final report
Access to surveys or something similar, to provide a more quantitative as opposed to qualitative sample of what people are experiencing.
I would have it either be a hub for advocacy (like petitions) or research (letting users see ongoing studies, submit and upvote research questions, etc.)
Complement features with the research participation
Communication with providers and researchers
Analysis of stories and feedback with AI, technology, ML
}
How do people living with long covid and/or diabetes define stories?
Patients share stories about their lived experiences, while providers' lived experiences are shaped by their patients' stories.
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People wanted features on the awareness, impact, and innovation map.
In the survey, there was a question asking people what changes they would like to see in their healthcare journeys to improve their experiences. Most responses emphasized a desire for more collaboration with providers and researchers. These answers highlighted existing gaps in the healthcare system and underscored the need for greater interaction and understanding among all parties involved.