Spring 2023 (Volume 33, Number 1)
Innovations in Data Collection
in Rheumatology
By Denis Choquette, MD, FRCPC
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Rhumadata™ celebrates its 25th year of existence
in 2023. When it was started, it collected data on
rheumatoid arthritis (RA) only. With time and
progressive subsequent technological improvements,
the registry now collects information on axial (AxSpA)
and peripheral (pSpA) spondyloarthropathies, including
arthritis associated with inflammatory bowel diseases.
All visits with rheumatologists (total 15) are included in
the database. Data collected include demographics, disease
history, comorbidities, and disease activity scoring
(disease activity score [DAS], clinical disease activity index
[CDAI], simplified disease activity index [SDAI], the
ankylosing spondylitis disease activity score [ASDAS],
psoriatic disease activity [DA], and more). Patient-reported
outcomes (PROs) are collected through different
channels such as in-clinic visits with the help of a nurse
or directly by the patient on a tactile screen or tablets.
Patients can also access their questionnaires online, following
an invitation reminding them to answer before
their clinic visit. All medications and comedications are
also collected with start and stop dates, and with reasons
for discontinuation, if this is the case. All pertinent labs
are also accessible and directly input to the database if
patients are residents in the Optilab region of Montreal.
Rhumadata can also be used as an electronic medical record
(EMR), can generate lab, imaging, and consult forms,
and retain historical data. It is also a self-evaluation
and practice self-reflection tool, allowing one to compare
one’s practice to that of the other members of the registry.
Rhumadata is also connected to another EMR as of the
last 5 years, from which we can also extract data from patient
visits. Other rheumatologists desiring to participate
have only to sign off on chart access approval. This way,
our database managers will be able to retrieve the data if,
and only if, the patient has signed an informed consent
form.
There are multiple facets to a tool like Rhumadata.
Of course, it is an important research medium exploring
efficacy, safety and pharmacoeconomic questions. But it
is also an instrument to optimize rheumatology practice
and follow practice pattern evolution over time.
For example, in partnership with the International
Psoriasis and Arthritis Research Team (IPART), a consortium
of registries on SpA across Canada, we examine
the residual burden of diseases in RA, psoriatic arthritis
(PsA), and ankylosing spondylitis (AS). More than a thousand
patients were included in the analysis, and we found
out that many patients are left with significant residual
disease activity at the 6- and 12-month time points. This
information should be of great interest to the rheumatologic
community, as it illustrates a significant gap in treatment
optimization. Many reasons are suspected but time
constraints are certainly an area to evaluate. More and
more administrative work to access biologic treatments
is required by the payers, increasing the work burden on
rheumatologists. Another example has been published
by the Rhumadata team: Which subsequent treatment offers
the best sustainability after a first anti-TNF failure?
Certain therapeutic choices show a higher likelihood of
retention, and also demonstrate pharmacoeconomic advantages.
The evidence thus shows that a medication with
a different mechanism of action should be used in this
situation. Lastly, a Canadian Institute of Health Research
(CIHR)-supported project was accepted for a poster at the
2022 American College of Rheumatology (ACR) meeting
in Philadelphia, comparing originator and biosimilar
biologics. Similar efficacy and safety profiles were shown.
This is reassuring for both practitioners and patients.
Rhumadata also participates in a pan-Canadian initiative
comparing the different registries in Canada. There is
some heterogeneity from one to another, leading to interpretation
challenges.
As more and more rheumatologists are using EMRs,
participation for everyone should soon be possible. It
should and will become part of usual practice, as it permits
each of us to reflect on the quality of their practice,
and will eventually be used for maintenance of competence
purposes as suggested by the College des Médecins
du Québec.
Denis Choquette, MD, FRCPC
Scientific Director, Rhumadata
University of Montreal
Montreal, Quebec
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