Through the mdtalk podcast, we’re on a mission to highlight the most critical issues impacting clinical research, the patient experience and the future of healthcare.
Listen to the episode here or search for mdtalk wherever you get your podcasts.
Episode summary
For this motivating episode of mdtalk, host LaQuinta Jernigan, Chief Operating Officer at mdgroup, was joined by Dr Eneida Nemecek.
Eneida is Medical Director of Clinical Research and Pediatric and Medical Oncology Doctor. at Oregon Health & Science University. Eneida is also dedicated to promoting diversity in healthcare and volunteers in a range of roles for incredible charities, some of which include:
- Board Director at Be The Match
- Executive & Steering Committee Member at Pediatric Blood & Marrow Transplant Consortium
- Advisory Board Member at Nick Wilson Charitable Group
- Clinical Trials Advisory Committee Member at the Center for International Blood & Marrow Transplant Research (CIBMTR)
- Director-at-Large at the American Society for Transplantation and Cellular Therapy (ASTCT)
LaQuinta and Eneida discussed Eneida’s experience as a medical doctor and professor; how these experiences have influenced her to dedicate herself to making healthcare equitable; and the vital role clinical research plays in creating health equity.
Some statistics to start the conversation:
- Between 2016 and 2018, over 74,000 people were hospitalised for sickle cell disease, 93.4% of whom were black, compared to just 1.8% of white people. Stem and bone marrow transplants are the only cure for this disease. However, the odds of finding a match are just 29% for black people, compared to 79% for white people.
- In 230 oncology drug trials between 2008 and 2018, race was reported in only 145 (63%) trials.
- Black and Latinx patients are consistently underrepresented relative to the US population in trials used for FDA cancer drug approvals.
There is much to discuss around these statistics. But as sobering as the figures are, inequality in healthcare has to transform from being just a well-documented subject into a movement dedicated to systemic change.
Eneida inspired us with the rallying call that “medical care is patient advocacy, and clinical research is a huge part of medical care”.
In her passionate and motivating interview, Eneida reminded us that we all have to work together across the medical industry to meet people where they’re at and take action, either in our own small way or as a part of an organisation, to address the barriers to equitable healthcare.
The medical industry must admit there is a problem with equitable access
Before we can create access, we need to establish global health equity, the medical industry needs to be honest with itself and first admit there is a problem with equitable access.
The main four barriers to equity are:
- Physical access
- Financial stress
- Systemic racism
- A lack of trust
Physical access
One of the very first issues patients face is understanding that there are healthcare and clinical trials they can enrol in. So, the immediate solution is to ensure there are easy-to-understand, simple-to-get-hold-of resources and materials written in accessible language which give potential patients all the information they need to understand there could be options available to them.
Once patients are informed and educated, implementing decentralised clinical trial methodology wherever relevant for the patient will enable us to take trials to patients instead of assuming that the patients can and will come to the trial.
Financial stress
We have to make participating in clinical trials affordable for everyone. The most common way of enabling patients to get to and from sites or appointments is by reimbursement. Assuming that patients can afford the initial outlay of flights, accommodation, childcare, missed working days, and subsistence while participating in a trial fundamentally misunderstands the scale of poverty in the U.S. and across the world.
Systemic racism
Not only is there widely documented systemic racism in the medical industry, but as individuals, we need to admit and be honest about our own biases. We all have varying degrees of personal bias developed from learned beliefs, opinions, or attitudes that we’re often unaware of which reinforce stereotypes. Although these personal biases are unintentional, they become inbuilt, automatic reactions to the world around us and unfortunately, lead to incorrect judgments.
A lack of trust
As humans, we don’t trust what we can’t understand, so a huge amount of work has to be done to find out what each community needs from the clinical trials industry before designing the materials and resources to educate and inform.
The medical profession is not representative of the communities it serves, so a degree of cultural humility is required even to gain access to the people it must speak with to start trust-building conversations. Partnering with community organisations, parking assumptions built around structural racism, and genuinely putting the patients first are the first slow steps towards building trust.
We must all work together to create equitable healthcare
Eneida said: “Our mission is to deliver the best healthcare possible to our communities. We must ask ourselves ‘Who are we missing?’ at every stage of the clinical journey.”
As well as working together to interrogate our existing processes, systems, and structures, our role as medical carers has to include advocacy for change.
Eneida continues: “We must get off the sidelines and use our voices for change. If you see something you don’t like, don’t look the other way; get involved and be the change you want to see.”
Thank you to Dr Eneida Nemecek for joining us to discuss how we can work towards ensuring equitable healthcare in cell-based therapies.
What else do you think we need to do to achieve global health equity? Let’s keep the conversation going.
Share your photos, videos, and experiences with us on Twitter or LinkedIn.
If you’ve enjoyed our conversation, please rate, review, and subscribe to the podcast wherever you listen. It helps other people like you who are committed to driving industry change to find us.
For more content around critical issues in the clinical research industry, follow us on social media, or visit our blog
