We live in an era where health care consumers desire data to make informed decisions about where they will seek care and from whom. We urge transparency in patient safety information and discuss the need for “evidence based medicine” incessantly. But what is full disclosure and is it healthy?
Every type of company has truckloads of data, be it market data, polling data or public opinion data. Health care also has millions of data bytes that can reflect everything from volume and financial metrics to outcomes, including survival and complications. Reports can be written to pull pieces out here and there, but the challenge comes from putting individual data points together to tell any kind of meaningful story. Internally for every large hospital, data management is difficult, especially to share in a timely fashion and in a format that can truly drive decision-making and change. To report information externally is an even harder task: How can we tell the story of a hospital or provider fairly and accurately in a context that has meaning to the vast majority of consumers?
Significant effort has already gone into discussions of transparency and disclosure. Groups like the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention with its National Healthcare Safety Network, the Centers for Medicare & Medicaid Services and many others have shone a light on aspects of health care that require both scrutiny and improvement. Movement in patient care has sometimes been the result — catapulting national efforts to reduce patient harm and hospital-acquired conditions, as well as erase the “never events.” For these types of broad efforts, metrics have been derived that can be benchmarked and compared. This has pushed U.S. health care institutions to less variation in processes, and has led to more equitable outcomes that are not quite as location dependent.
The lever? Financial penalty to the low performers. There is not much data on the reasons low performers exist. It is not clear if it may be a resource issue versus a complacency issue. If it is a resource issue, it seems counterintuitive to take more capital from institutions and decrease opportunities for investment in improvement programs. This strategy might have been a good starting point to get people to pay attention, but will it sustain the effort long term? The principles of mathematics would suggest that as programs improve and get closer in performance, institutions performing just barely outside of the bell curve of performance may incur unfair penalties.
The conundrum of interpreting data gets even more complex with efforts to drill down on a specific specialty or provider. While most professional societies have databases with information, these are relatively new and less detailed than necessary to give full context to data held within.
Take for example the surgical subspecialty of congenital heart surgery. Recently, national attention has driven this group of surgeons toward transparency with regard to outcomes. While the data is a factor, it is important to understand the field as well as how to appropriately interpret it.
Congenital heart surgeons are a small group of cardiac surgeons who take care of children born with complex heart defects. They train for six to 10 years after graduating medical school and then become apprentices for senior surgeons until they have enough experience to operate on the most complicated hearts on their own, likely into the second decade of their career. The majority of these individuals practice in academic settings to teach the next generation and encourage them to build on advances made in this field over the past four decades.
During this period, the advances in their field have been noteworthy. Take the most complex repair, known as the Norwood procedure, for children born with only three heart chambers, for example. They have turned their outcomes completely around. In this benchmark surgery alone, the expected mortality was 80 percent in the early 90s but now the metric has reversed to 80 percent survival in the current day. To continue to benchmark for a field that is rapidly evolving, their professional association, the Society of Thoracic Surgeons, has developed a congenital heart database that attempts to track defects, repairs, complications and survival. It is a monumental effort and, while far from perfect, continues to evolve.
However, every baby and child is different. The nuances associated with each one’s heart defect and the vast care required to treat these little patients — beyond the surgeon’s hands — is hard to reflect in the data. Some of these children have such complex heart problems that the attempt at surgery might be considered a heroic salvage effort by many. These surgeons frequently take on high-risk patients who would definitely not survive without intervention. These details may not be apparent from raw data, and without appropriate context, they may be interpreted as solely reflective of a surgeon’s capability.
Not only is that not an accurate rendition of the story, but it could result in unintended consequences such as causing every level-talent to shy away from high-complexity fields, creating hesitancy in taking on high-risk salvage cases or even impeding the evolution of care programs. The result could be a significant chasm in the evolution of much-needed health care for children.
The need to have data to make informed health care choices is critical in every specialty. The tricky part is getting the useful data in the right context to make decisions while avoiding any of these unforeseen consequences or unfair judgments. We need to be able to inform the public about risk so that it can be mitigated. We need to note holes in the medical system that need to be shored up and reinforced so that people can get the care they need. With that, however, needs to be recognition that not every outcome will be as desired. There are medical issues and complexities that unfortunately may not be salvageable. The questions will be in those times: Why? And could the outcome have been different in ways that can be controlled by the medical establishments?
As a society of health care consumers, we need to analyze what data we want to know and come up with ways of processing it so that we can make informed decisions. We need stratified information on outcomes and complications based on the complexity of the cases themselves in ways that truly allow fair comparison. We need to find a just culture of interpretation of data so that organizations and individuals are not unfairly judged. We need opportunity to pursue innovation and continuous improvement. We need a system that allows heroic efforts for the individuals that otherwise would not have a chance at survival. That is why so many physicians devote years of their life to honing their skills, and that is what our children deserve. We don’t want to lose that in the data.
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Data Transparency: What the Numbers Don’t Tell Us About Quality Health Care originally appeared on usnews.com