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Policy

Medical practice often follows or reflects policy. Our researcher conduct empirical work to inform policy as well as consider the ethical implication of current policy in clinical practice.

Learn more about the work of our center members in this area below.

 Angira Patel, MD/MPH

Exploring and understanding ethical issues in pediatric cardiology that may have implications for parental decision making and policy; developing a certificate program to provide foundational knowledge of bioethics to medical trainees.

Ethical issue in Pediatric Cardiology

I am interested in issues that affect decision-making, informed consent, and implications of policy recommendations in pediatric cardiology. To this end, I have pursued research relating to:  

  • Implications of universal lipid screening and statin therapy in children
  • Pediatrician attitudes towards universal electrocardiogram screening and its implications
  • Variations in practices for heart transplant listing among pediatric transplant cardiologist
  • Presence of concomitant genetic abnormalities in neonates undergoing surgery for congenital heart disease and its potential impact on parental decision making
  • Parental refusal of surgery for congenital heart disease

Bioethics Certificate Program

I am involved in creating a bioethics certificate program for graduate medical trainees.  Clinical medical ethics or bioethics has long been recognized as an important component of residency education and requires that residents are provided educational experiences to demonstrate competency in professionalism and interpersonal and communication skills. Specifically, understanding ethical principles, identifying ethical issues encountered in medicine, and demonstrating the ability to perform ethical analysis is critical in clinical decision-making when it involves consideration of patient and family values.   Training physicians to do this well and be leaders in the future in biomedical ethics education can be challenging.  My goals for this program are to: 

  • Evaluate the current landscape of trainee education with a rigorous needs assessment
  • Explore methodologies to develop a curriculum that will not only effectively teach ethics to medical trainees but will also identify tools that will translate to trainees’ future careers

For more information, please see my faculty profile.  

Publications

See publications in PubMed.

Contact

Contact Angira Patel, MD/MPH, at 312-227-4100.

 Erin Paquette, MD, JD, MBe

Studying questions at the intersection of policy, ethics, and practice; addressing barriers to research participation, particularly for vulnerable populations; examining how changes in federal policies have impacted geographic access to primary care providers for publicly insured children

PICU Biobank Project (Sabrina Derrington, Co-PI)

Proposed changes to federal rules governing research could have a monumental impact on consent for research, particularly for research using biospecimens collected from patients. Biospecimen research can advance care by permitting investigations of population-level differences in disease susceptibility and response to therapy. Yet, this research raises unanswered ethical and regulatory questions, including what constitutes appropriate consent. Current federal regulations provide limited guidance about obtaining consent for such research and do not address unique aspects of obtaining consent in a critical care setting. Our pilot study sought perspectives from 75 parents of critically-ill children, 20 adolescent and young adult patients, and 30 nurses about a broad based prospective opt in consent for biorepository research. Findings will help develop approaches to consent for precision medicine initiatives. We are also developing an electronic consent process that can incorporate multimedia based explanations to improve comprehension of research. Learn more about the PICU Biobank.

Consent Burden

In research on less common illnesses, the scarcity of subjects creates a situation in which a single patient may be eligible for multiple trials. Healthcare providers sometimes perceive being approached for multiple potential studies as overly burdensome to their symptom-laden patients. Concurrent research is an increasingly common practice in the pediatric intensive care unit, but little research has been conducted as to the internal factors which influence a parent's decision to enroll their child in research. This study will determine the influence of several factors on participation in PICU research. In particular, the study will evaluate how parental stress, severity of child illness and concurrent eligibility for multiple studies impact parent willingness to participate in research.

Geographic Access to Primary Care Providers for Low-Income Children

Two decades ago, investigators in a large metropolitan area examined density of Medicaid-eligible children to provider, showing a significant underserved population related to geographic accessibility to primary care providers despite eligibility for health insurance coverage. Policy changes over the last two decades, including the Affordable Care Act (ACA), aim to improve access to care. The ACA has one of its aims specifically to improve the primary care workforce. The impact of these changes on geographic accessibility is unknown. Through geocoding and heat mapping, this study will evaluate geographic trends in provider and recipient locations and, through regression modeling, will examine the relationship between distance and select health outcomes.

For more information, please see my faculty profile.

Publications

See publications in PubMed.

Contact

Contact Erin Paquette, MD,JD, MBe, at 312-227-4800.