Conquering CHD held The Meeting on Health Disparities in Congenital Heart Disease on February 28, 2021. Due to time constraints not every question could be answered live. The expert panelists have provided answers below.
Session: Barriers Affecting ACHD Care
Moderator: Roberta Williams, MD
Experts: Wayne Franklin, MD; Stephanie Fuller, MD; Keila Lopez, MD; Sasha Opotowsky, MD; Roslyn Rivera, RN, BSN, CPN-BC; Ms. Jennifer Iguina; Ms. Jennifer Weiner
What barriers exist in terms of insurance for adult CHD patients receiving care at a pediatric hospital? What advice do you have for ACHD patients trying to get their care approved by insurance?
For patients with managed care insurance, the cardiologist and hospital must be in the same network with the primary care provider. Planning with financial services while in pediatric cardiology care is important. Once in the adult health system, the primary provider is key for access to cardiac services and can serve as an advocate if special contracting is needed. Managed care organizations also have patient navigators who may help. –Roberta Williams, MD
How is the ACHD medical community thinking about expanding access to ACHD care into more rural areas? Centers are still few and far between and their importance isn’t well communicated in less populated areas.
The pandemic has accelerated the use of telehealth which allows some programs to provide at least some of the care directly and/or support a local physician in diagnosis and management. There are also published guidelines which can help local cardiologists know what events or findings indicate referral to the ACHD center. –Roberta Williams, MD
How can we keep ACHD patients of color connected to their clinic after their surgery? Is there something other patients can do?
For any group at risk for being lost to followup, regular check-ins by trusted allied health professionals who are a part of the team can reduce dropout. –Roberta Williams, MD
Session: Implicit Bias versus Explicit Bias
Moderator: Rita Higgins, RN
Experts: Kiona Allen, MD; Sal Ginde, MD; Veronica Gunn, MD; Shuntae Williams, PhD; Ms. Belen Altuve; Ms. Tori Smith
I’m curious about implicite/explicite bias as it relates to families of color seeing practitioners of color. Does it matter? I can only imagine that leads to better quality of care for black and brown populations.
A large body of research has described impacts of racial and ethnic “concordance” – when patients and providers share race and ethnicity – and discordance – when patient and provider are of different races or ethnicities – on various healthcare processes and experiences. The likelihood of seeking preventive services, the likelihood of maintaining primary care, positive perceptions of clinical interactions, and overall patient satisfaction with care have all been associated with racial and ethnic concordance between provider an patient. These, and similar findings, have served as one rationale for incentivizing more persons of color to enter the medical profession. However, it is also important to note that providers of color are not immune to implicit bias, nor are the systems in which providers of color practice free from implicit bias. Thus, it is imperative for individuals and systems to implement strategies to increase awareness of implicit biases, and to address biases, once identified. –Veronica Gunn, MD
I don’t feel that it is necessary for a family to see a practitioner of color to receive equitable care. I do however feel that 1) Providers must make an intentional effort to know and understand their patients on a personal level. When you don’t share the same background, it may be more difficult to form connections. It is essential to be comfortable with being uncomfortable, be willing to ask questions, and be honest about what blind spots you may have. 2) Representation of diverse providers matters. Even if a patient of color doesn’t have a provider of color, when an organization reflects the diversity of their patients, it helps the organization develop cultural competency, which leads to more open communication. Patients also may feel safer in facilities where they observe diverse teams working together. –Rita Higgins, RN
Yes, bias has a very negative impact on the quality of care and patient outcomes. It is important for all providers to have implicit bias training, but that is not sufficient. It is important to find ways to increase the number of providers of color so that they reflect the communities they serve. –Roberta Williams, MD
Do you feel built in implicit bias training and cultural competencies starting at the med school level and perhaps as required CME may help with mitigating biases and disparities?
Instituting implicit bias assessments and incorporating cultural competencies as standard components of medical education is an expectation of the Liaison Committee on Medical Education (LCME), the accrediting body for US medical schools. Providing students additional opportunities to learn about and address implicit bias earlier – before stereotypes and assumptions become ingrained behaviors – would be even more beneficial. –Veronica Gunn, MD
I do feel that incorporating education in medical school and beyond can help, but I also feel this education should start much earlier. The more medical professionals understand a patient, their environment, their beliefs, etc., the better partner they can be in helping manage that patient’s care. –Rita Higgins, RN
That is an important goal. Implicit bias training should be required at regular intervals and designed to be engaging. –Roberta Williams, MD
Session: Access to Care versus Access to Quality Care
Moderator: Brett Anderson, MD
Experts: Elijah Bolin, MD; Joseph Burns, MD; Shab Peyvandi, MD; Ram Kumar Subramanyan, MD; Carol Raimondi, RN
Is there any work being done currently to coordinate mental health care with medial care for CHD patients? Screening, assessment and treatment of mental health seems to be an afterthought that is completed once there is a higher level issue rather than embedding these into ongoing medical care.
Many CHD programs are embedding developmental and mental health services in their programs. A limiting factor is that in some states, reimbursement for these services does not cover the costs. That is probably the prime reason why these services are not as readily available as they should be. –Roberta Williams, MD
Yes – but not enough. We have Child Psychologists in a few big centers. But they are not integrated into the care as well as they should be. We have also learned to involve Child Life Specialists to help children with emotional wellness, this is a bit better handled than overall mental health. –Ram Kumar Subramanyan, MD
As someone who’s very involved with parents at our local hospital, something I encounter often are parents who don’t have the educational background to grasp even the basic concepts of their child’s diagnosis – there seems to be an educational disparity as well. Can anyone comment on ways that providers or even volunteers/support systems can be helpful to parents in this situation?
This is a very important problem that needs to be addressed. We have found some approaches may help. One is to repeatedly address issues with parents – different providers repeat concepts to families in their views. This way the parents get to hear multiple versions. Being culturally sensitive and using Native language will also help. We use a lot of pictures, animation, and drawing. We have our own versions in the hospital, and on the ctsurgerypatients.org website. We have connected families with other volunteer families whose parents have had children with similar problems. –Ram Kumar Subramanyan, MD
Session: Addressing Cultural Differences in CHD Care
Moderator: Wendy Nembhard, PhD
Experts: Adrienne Kovacs, PhD; Swati Kunduri, PhD; Erica Sood, PhD; Nicolas Madsen, MD; Andrew Van Bergen, MD; Mr. Ken Woodhouse
How do we (clinical providers) help parents feel comfortable and confident enough to engage in conversations involving their child’s care?
Including them in day-to-day rounds, actively seeking their input, specifically letting them know that we want them to be part of the care of their child. For complex care, we schedule bi-weekly provider meetings with the family to further provide them this opportunity. –Ram Kumar Subramanyan, MD
How can patient advocates support their institutions in addressing cultural needs of their patient/family community?
Great question – identify implicit bias, provide areas for concrete improvement in approach. Help with translations, help with videos/talks that provide culturally sensitive approach to medical care. –Ram Kumar Subramanyan, MD