Hello WombCare Warriors,

Patient-centered care has taken a central and much needed focus within our healthcare system and for good reason.  Many health care providers and thought leaders are coming to the realization that focusing on patient experiences leads to better outcomes.  A recent 2018 Harvard Business Review post highlighted the challenge with creating robust technology and listening to patient stories  with the former causing a lack of empathy for caring patient, burnout, fatigue and depression among clinicians.

While the Ontario’s health system continue to make strides in setting up patient-centered interventions like patient and family advisory councils, still many voices from marginalized groups are not heard at the policy-making tables.  This is due to years of mistrust among marginalize groups and the medical community whose lived experiences are often excluded, healthcare professionals do not understand their decisions, and limited interventions to address their needs or concerns.  The list goes on and on…

Why is patient-centered care for marginalize communities so important now more than ever?

During this COVID-19 pandemic there has been a deep revelation to the systemic racism embedded within our institutions.  Reports from both the US and Canada reveal that Blacks and Latinos are disproportionately affected by the virus compared to other groups.  Unlike the US, Canada still had no interest in collecting race-based data until there was an outcry within our community that Black people continue to suffer from COVID-19 and other chronic ailments at alarming rates.  A recent CBC news report provided insight from Councillor Joe Cressy on the importance that race-based data collection will have on creating better policies for our communities.

Over the past two weeks, I have shared some of the challenges of my own reproductive health journey with the hope to inspire others to do the same.  While this is a great risk to share such private details of my health, I think it is crucial that our stories are heard to transform the care we receive.

Key Lessons I learned in sharing my story

  1. Vulnerability breaks the cycle of shame – due to the historical trauma that many marginalize groups have faced by the medical community within the dominant cultures in Western society, we have learned to build walls of mistrust at times to protect us from further discrimination, but often times leads to limited access to resources that can help us. When I first shared my story of my infertility challenges with a trusted friend, it was the catalyst to break the silence and shame that I carried for many years.  Shame and silence are some of the quiet-killers damaging our communities.  By risking vulnerability, you too can begin the healing process and get the help you deserve.
  2. My lived experience can transform the health I receive.  Once I started to own my lived experiences, this gave me the courage and confidence to respectfully demand better care for myself.  With having uterine fibroids, I have had many diagnostic tests, and poor treatment from radiologists and support staff which made me feel angry and dis-empowered.  I got the courage to ask for better care during these visits, which can be quite invasive and painful.  Simple strategies like asking the radiologist to allow me to hold the ultrasound probe during a transvaginal exam or having access to a narrow speculum during an IUI procedure.  These options allowed me to have a safer, and more pleasant patient experience.
  3. Transparency builds community. I have mentioned several times in my post, the freedom that sharing our stories bring as well as giving me a chance to build a community of patients with similar journeys to my own, as well as access to researchers and policy makers who, like me want to drive change for marginalize groups.  My story has led me to create WombCare and a deep passion to conduct research to improve the reproductive health
  4. outcomes for marginalize people who may not have the platform that I do.  This community that I now belong to have a desire and commitment to conduct research that impacts the lives of the most vulnerable and underserved in a pivotal way.  We strive to disrupt the current and fragmented healthcare system to create population interventions for marginalized patients to be seen, heard, respected, valued, cared for, and most importantly become integral change agents to the care they receive.

So, I am curious to know what has your patient story taught you??  Post a comment below.