Disability Equity in Health
@DisabilityEH
Committed to serving in the disability community & fighting for equity in the healthcare system.
ID:1347262512492912641
07-01-2021 19:23:30
67 Tweets
168 Followers
193 Following
The #DisabilityEquity & #RightsStrategy is a major opportunity to set commitments, expectations and resources that will save and improve the lives of #PeopleWithDisabilities in our region, their families and communities.
Add your voice!
Melbourne Disability Institute Disability Equity in Health
Implementing The “STOP Pain” Questionnaire into a #pediatric transitional pain clinic, by SickKids Anesthesia and Pain Medicine DrLisaIsaac and SickKids Pain Centre team in Journal of Patient-Reported Outcomes Catherine Stratton, MPH
doi.org/10.1186/s41687…
#PedsPain #ChronicPain
I am so thrilled to have announced the Global Moyamoya Patient Registry! This is an initiative I have been working on for quite some time with MoyaMoya Foundation! We hope having a patient-facing registry with a global scope will optimize research! #RareDiseaseTruth #PatientEngagement
MoyaMoya Foundation is hosting a virtual event on May 6th with research presentations and a panel disucssion of patients, caregivers, & clinicians. There will also be a special announcement on how patients can get involved in research! More details soon! #RareDisease Truth #RareDisease
Excited to share a COVID-19 and Cancer Consortium (CCC19) Registry paper, led by Sam Rubinstein!
Compared to non-B-lymphoid #hematologic #malignancy pts, B-lymphoid malignancy pts showed ⬆️ risk of severe #COVID & receiving anti-cancer therapy w/in 12 months of COVID Dx ⬆️ COVID severity.
doi.org/10.1158/2643-3…
It’s #RareDisease Day ! Finding community after feeling alone for years is profound. My greatest hope for #RareDisease research is that pts don’t solely survive, but thrive bc the world has so much to gain from this community. #RareDisease Day 2022 #LightUpForRare #RareDisease Truth
#RareDisease Truth : Having a #RareDisease shapes so many other aspects of life: identity (esp if there was illness in childhood), sense of humour and sense of fairness. It informs almost every perception, every perspective, every experience. It’s at the core. #RareDisease Day
#RareDisease Truth : Pts w/ #RareDisease s are deeply familiar w/ the curiosity their conditions evoke. It is critical to remember that #RareDisease pts’ do not exist for clinicians’ intellectual enrichment. Lived experiences are not a fascination for consumption. #RareDisease Day
#RareDiseaseTruth : It’s expensive. In 🇨🇦, I pay $0 for tests, appts, & procedures. But this can be misleading. More costly Rx are ordered bc of contradictions w the “standard” Rx for Sx. Those who travel for care are seldom fully reimbursed. These are costs #RareDiseases impose.
#RareDisease Truth : Pts have a complex relationship w/ health provision that is not directly related to their #RareDisease . Sx that suggest something else are often attributed to the pt’s primary Dx. This prolongs suffering. Remember: #rare pts can have “common” illnesses as well!
Very excited to share my co-first author publication on the accessibility of Youtube fitness videos! An amazing effort w/ Shevali Kadakia, Yinfei Wu, @SeriFeliciano, & Sports Equity Lab! #Disability #PhysicalActivity #accessibility
JMIR Publications @J_FormativeRes
formative.jmir.org/2022/2/e34176
Happy to share our paper on risk factors for serious #COVID19 outcomes among #geriatric adults with #cancer ! COVID-19 and Cancer Consortium (CCC19) Registry
sciencedirect.com/science/articl…
Today’s #RareDiseaseTruth is on #epidemiology : with heterogeneous & scattered populations, metrics like #prevalence , #incidence , #mortality , and #predictors for #RareDiseases are difficult to measure. This downplays the #risk & #burden they pose. #LightUpForRare #RareDiseaseDay