Hi, I'm Adrienne presenting work titled "Divided We Stand--
The Collaborative Work of Patients and Providers
in an Enigmatic Chronic Disease."
There's a rich body of work in CSCW and HCI
that guides development of tools to support
care of chronic illness.
Our work specifically focuses on enigmatic chronic diseases
that are poorly understood scientifically and difficult
to manage.
There is no biomarkers to rely on.
And it's unclear which symptoms to rely on.
So monitoring is difficult. There's no established
guidelines, so treatment is difficult.
And there's a lot of obstacles to communication.
So partnership and understanding are difficult for both patients
and providers.
Our work specifically focuses on endometriosis, a debilitating
illness impacting 6% to 10% of reproductive-age women.
There's no biomarkers, no clear treatment guidelines,
and no cure.
Our study is driven by two main research questions.
The first-- in the work of patients and providers
when caring for endometriosis, what aspects of their work
pertain specifically to such a complex condition?
This is driven by the frameworks of work and patient-provider
collaboration, especially when patients
have a lot of knowledge.
Second research question-- what role does technology
play in facilitating the partnership and the success
of endometriosis care?
And what opportunities are envisioned?
We see this as our main contribution of this work
to help design for common ground and sense
making in a context of complexity and uncertainty.
In this qualitative study, we conducted
semistructured interviews with 10 endometriosis specialists
and five focus groups with 21 endometriosis patients.
The details can be found in the paper.
We conducted a thematic analysis of the transcripts,
extracted insights about the work and technology
in the form of themes, and used these themes
to come up with design implications.
We found that patients want to use their records and data
to construct a holistic picture of their illness trajectory,
reflect and make sense of their illness experience
both over the short term and the long term,
and facilitate care and self-management.
And this is true for patients on their own
and together with their providers.
But the complexities of endometriosis as an enigmatic
condition complicate care.
We have four main themes.
I'll go over them briefly and then give details of one.
So the enigmatic nature and lack of medical guidelines
means that it's difficult to make sense of what's going on.
And it's hard to figure out what kind of treatment
might be effective for a particular patient.
The multifactorial and systemic features of the disease
mean that there's a lot of body systems involved and symptoms
beyond pelvic pain and pain during your period
like fatigue and GI symptoms.
This overwhelms patients and providers working together
for comprehensive care.
The third theme, the chronic and temporal dynamics,
which are experienced quite differently
for patients and providers, adds a lot of confusion.
And finally, the interpersonal dynamic
of patients and providers, where patients have
to become their own advocates.
And providers emphasize getting on the same page as patients
about expectations of care and treatment.
So there's a lot of negotiation of knowledge and expertise,
which is necessary and beneficial,
but there's also a potential for significant patient-provider
misalignment.
Here's an example of the chronic and temporal dynamic theme
where patients and providers have
very different perspectives about the granularity
of their understanding of illness.
And these mismatches really guided our design implications.
So we came up with three design opportunities.
The first is to construct and curate
a holistic representation of the illness trajectory and health
status.
And this opportunity really supports the next two.
The second is to help reflect and make sense of the illness
experience.
This relies largely on visualization techniques.
And the third is to scaffold collaborative work and actively
correct misalignments.
And this uses a lot of templates.
Some details on this first design opportunity
to link and synthesize the clinical
and the raw self-tracking data into a comprehensive timeline.
Second is tools for data curation, which
is found in other similar research
to transform these artifacts that
are used for independent use into artifacts
for collaborative use to support care.
And finally, leveraging narrative
to tell a patient's story and then integrating
these with data-driven solutions to reflect on and craft
representations of a patient's personal illness trajectory.
Thanks, and here's our contact information to reach out.