Introduction

A young pregnant woman learns during her 20-week ultrasound that her baby has a complex congenital heart defect. Having limited resources upon hearing this information, she turns to the internet and social media. She finds that the community is emotionally divided about the quality of care provided at her closest pediatric heart center. She is confused and faced with a pit in her stomach. She needs quality information that will help her make a decision about the care of her child.

Parents require information in order to effectively participate in making informed decisions about their children's care. In the current environment, this information may be derived from biased sources, including well-known national ranking systems, anecdotal peer consultation, or even a trusted relationship with a misinformed practitioner. Accurate, accessible, understandable, and relevant information is critical to empowering parents, resulting in improved outcomes in both patient health and family experience.

A Changing Environment

The National Patient Safety Foundation contends that the effectiveness of transparency has been overlooked and that the deliberate withholding of information due to exaggerated fears and self-interest places patients at risk.¹ However, providers may be concerned that unfettered transparency might result in migration of care, center closure for low performance, loss of reimbursement, and legal ramifications especially for new practitioners, despite a study demonstrating that transparency does not impact litigation rates.²

Transparency Through Public Reporting of Outcomes Data

Public policy changes and the growing number of health care quality information sources suggest that consumer access to information regarding safety, quality, and outcomes is becoming increasingly in demand. However, for parents of children with congenital heart disease (CHD), information is not readily accessible, often difficult to interpret, and challenging to make personally relevant. It may be easier for parents to determine the health impact of a breakfast cereal than an institution providing life-saving care for their children!

In 2012, expert stakeholders identified 21 quality measures in pediatric and congenital heart surgery based on opinion consensus and published research.³ With the goal of improving patient experience and outcomes, multi-center registries are currently collecting data to support quality improvement.

Unfortunately, this quality data is available only to participating centers and not to the families themselves. A handful of centers have espoused self-reporting on their own websites to support transparency. However, the lack of context and diversity of reported measures makes lay interpretation difficult. In January 2015, the Society of Thoracic Surgeons began publishing congenital heart center surgical outcomes data on its website, an important milestone in centralized CHD-specific public reporting. Yet, this resource is not without limitations. While the data is adjusted to provide consistency between centers, a limited number of data points by only a fraction of centers may be minimizing its relevance to the individual patient.

Transparency Between Providers and Patients/Parents

In the absence of obtaining information through publicly reported mechanisms, transparency between patients and providers becomes essential. Providers must prioritize communication of accurate performance, outcome, and quality data ahead of patient reassurance. This leads to effective shared decision making, as well as improved outcomes and care experience.⁴

This is not without its challenges. Families differ in their levels of engagement, health literacy and learning styles, requiring individual accommodation to communication modality, timing, and frequency. Although it requires significant commitment from the provider, transparency is necessary to fully inform parents.

Opportunities

As public reporting of data improves, it is expected to empower parents in making health care decisions. Creating resources to improve existing data interpretation and encouraging participation from a greater number of centers may improve relevance.

The greatest opportunity for improved transparency lies in a commitment from both providers and parents to share information openly and honestly. Equipping families with data-driven, standardized questions that they can ask their providers creates a bridge for dialogue. Providers should confidently be able to answer these questions and then have the opportunity to explain any differences. Parents want and need to be empowered to collaborate in making informed decisions about the care of their child. It is the right of the parent and the responsibility of the providers. Working together to improve transparency, parents and providers can improve outcomes and save lives. CHD data may be complicated, but sharing information does not need to be so.

References

1. Kachalia A, Kaufman SR, Boothman R, et al. Liability claims and costs before and after implementation of a medical error disclosure program. Ann Inter Med 2010;153:213-21.
2. National Patient Safety Foundation Roundtable on Transparency. Shining a Light: Safer Health Care Through Transparency. 2015. Available at: http://www.npsf.org/?shiningalight. Accessed 4/20/15.
3. Jacobs JP, Jacobs ML, Austin EH, et al. Quality measures for congenital and pediatric cardiac surgery. World J Pediatr Congenit Heart Surg 2012;3:32-47.
4. Barry MF, Edgman-Levitan S. Shared decision making: pinnacle of patient-centered care. N Engl J Med 2012;366:780-81.

Keywords: Access to Information, Cardiac Surgical Procedures, Child, Child Care, Consensus, Heart Defects, Congenital, Heart Diseases, Infant, Parents, Patient Safety, Pediatrics, Pregnancy, Public Policy, Quality Improvement, Registries, Stomach, Surgeons

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