Children’s Mercy was one of the first pediatric cardiac surgery programs in the nation to voluntarily share surgical outcomes with the public via the Society of Thoracic Surgeons’ (STS) website.
That level of transparency is critical to quality improvement for patients, families and staff, as well as for pediatric heart surgery programs nationwide.
Today of the approximately 120 pediatric heart surgery programs belonging to the database, about half voluntarily share data publicly.
Children’s Mercy has been an early adopter of transparency.
In this podcast James E. O'Brien Jr, MD, explains that evaluating this objective information, Children’s Mercy has improved the care we provide patients and their families, helping us rank among the top programs in the country.
Transparency in Heart Surgery Outcomes
Featured Speaker:
Learn more about James E. O'Brien Jr, MD
James E. O'Brien Jr, MD
James E. O'Brien Jr, MD., is the Division Chief of Cardiovascular Surgery; Co-Director, Ward Family Heart Center; Jerry Smith Chair in Pediatrics; and Associate Professor of Pediatric Surgery, University of Missouri-Kansas City School of Medicine. He completed medical school at the University of Connecticut before completing his General Surgery residency at Thomas Jefferson University Hospital in Philadelphia. He went on to complete a Fellowship in Cardiothoracic Surgery at Thomas Jefferson University Hospital and then a Fellowship in Congenital Heart Surgery at Children’s Hospital of Philadelphia.Learn more about James E. O'Brien Jr, MD
Transcription:
Transparency in Heart Surgery Outcomes
Dr. Michael Smith: Our topic today is transparency in heart surgery outcomes. My guest is Dr. James O'Brien. He is the division chief of cardiovascular surgery at Children's Mercy. Welcome to the show.
Dr. James E. O’Brien Jr, MD, FACS: Thank you for having me.
Dr. Smith: Let's start this way. Let's back up a little bit and talk a little bit about why this is an important topic. Why do we need transparency the way that we are beginning to see from programs like your own? What's driving this? Give us a little bit of the history?
Dr. O’Brien Jr.: I think truly what's driving it at its baseline is that families have become much more engaged in the care of their child in terms of their medical care. They're much more knowledgeable, they're much more sophisticated in terms of the issues, and for them to have more for an understanding of that care and for them to be more engaged, it leads to better care for their child. For them to understand that, they need to understand not just the technical details of the surgery or what the plan of care is, but also what the outcomes are and how various institutions are successful or aren’t as successful with those outcomes. On a nationwide level, there's also been a push for this, not just from the consumers and families themselves, but also from the national organizations. Most of that’s been used as a quality improvement and quality assessment tool.
The Society of Thoracic Surgeons, which is one of our national bodies, has for years a very large registry and database that you can then use for your own program to judge how you're doing against the national benchmarks. This is not meant to be a competition between programs, but this is just so everyone’s boat can float a little bit higher if you will so that if you use this as to identify areas within your program that you can improve to relative to national benchmarks, then obviously everyone is going to be able to provide better care. It’s been driving from both of those directions – both from the families demanding more information and becoming more knowledgeable, which is only beneficial to the care of the children, and also based on a national quality improvement initiative.
Dr. Smith: How is this affecting patient care at this point now that we have this large database as more and more programs are participating? How has this so far affected patient care and what's your hope for the future?
Dr. O’Brien Jr.: I think it’s hard to say right now how the transparency has directly affected patient care in terms of each individual program. I think overall what it’s done is it’s led to everyone’s programs being much more cognizant and aware of their own outcomes relative to the benchmarks in improving their program. It’s also led to a better conversation with the families. It’s hard to dumb this down if you will the outcomes for pediatric cardiac surgery like you would for appliances. The STS database does do public reporting and it is done in a platform that utilizes consumer reports, but it's not like going to consumer reports and trying to analyze which is the best car or best refrigerator. The complexity of cardiac surgery and the differences in risk stratification are quite large, so it does require somewhat of an education on the family's part to understand that some cases are more straightforward and have much better outcomes than others and there are still some very difficult congenital heart defects out there that while we've come a long way still have survivals of 80% to 85%, whereas a lot of the others are about 99% to 100%. While I think it's given everybody a structured conversation if you will, it's given people a place to start their conversations of how serious is my child's heart defect, what are the expected outcomes and how does that compare to the national benchmarks.
Dr. Smith: This database, how long has this information been collected, and when you talk about families in this case, are you talking about families directly accessing this type of information on the website or is it really about the pediatric surgeon using that information in their assessments of the child and in speaking during the clinical exams to the families?
Dr. O’Brien Jr.: It's both. The database has been around for over 10 years now and that's been used by the individual programs in terms of understanding how their outcomes compare to national benchmarks. That's been used by the programs individually to improve their outcomes and in discussions with the family to save the expected outcome for your child's specific condition based on a national sample is X. The problem in congenital heart surgery is that the numbers are small. There are so many different conditions that you can have and so many different surgeons that you could have that at anyone's institution, the relative number of procedures done in a given year is small. To give an outcome based on a small end like that is not as valid as if you give it based on its national sample, so you have a much better idea to say based on the national sample, a patient born with ductus arteriosus are going to have outcomes of 90%.
What's happened is more recently in the last three years is that there's been public reporting made available, so now families can go directly to the website at the STS database or we provide it on our own website and many institutions do that to see what the outcomes are. That starts the conversation, you got families coming in to know, do your consultation with them and they’ve looked that up, they know what that is, they know the questions to ask, they want to know what your outcomes are and they want to know what the numbers are that you’ve done. By making that transparent, by making that readily available to the public and to the patients and their families, it really does lead to more patient autonomy and better education and ultimately to improve patient care.
Dr. Smith: How many programs actually are surgical programs throughout the United States belong to this database, and for those that don’t participate in sharing this information, why isn't that they don’t?
Dr. O’Brien Jr.: The program has started on a voluntary basis, so there's a little over 100 programs in North America - Canada and the US - that provide care for patients with congenital heart disease. Of that, when they first did the initial public reporting on a voluntary basis, there were only 18 programs, including our own at Children’s Mercy that decided to put their outcomes out there in the public reporting. It’s now increased to about 2/3rds and I thoroughly expect it to increase more than that. The downside to putting it out there is, one, if your outcomes are not as good as some of the other programs, obviously there's a risk of doing that, and the other is there is a real risk of public reporting that can have some detrimental outcomes in terms of leading to a risk aversion or a deterrence by some of the institutions of taking on the higher risk patients even to the point of denying care to very high-risk patients. That's why you wouldn't participate. It's why if you are a program that does take on high-risk patients, and we at Children's Mercy have always had a policy and a commitment, that we will continue to take care of the higher risk patients. The public reporting has to be done with that understanding, so there does have to be a level of education for the families to say if we're a program that is going to continue to work on the cutting edge and going to take on the highest risk patients, that has to be factored in as opposed to the smaller volume program that's not going to take the high-risk patients – that's going to transfer them out – so their overall outcomes may look quite good, but that's not the question you should be asking. The families should be asking if my child has this specific condition, how is that outcome at your specific institution, and that’s why we have to make sure that we don’t make the rating system too simplistic with just a number of stars like you would for an appliance or a car.
Dr. Smith: I do want to mention to the listeners that Children’s Mercy was one of the first programs to actually participate in this database. Is that correct?
Dr. O’Brien Jr.: Yes, we were, not just to participate, but also to participate in the public reporting.
Dr. Smith: I know your role is an auditor for this database and all this information that is being collected. Tell us a little bit about what your role is there and, in summary, what would you like people to know about transparency and pediatric cardiac surgery.
Dr. O’Brien Jr.: My role as an auditor for the Society of Thoracic Surgeons is that in order to make sure the database is as truthfully as possible is that everyone’s data submissions are audited on a five-year basis. Once every five years, your program is up for auditing. What happens is then the auditors come for the site visit, they review all your data and just make sure that what you're submitting is as accurate as it can be. It’s really meant as an educational process both for the society and also for the programs to make sure that the data that we have is as reliable as it can be. I think the importance of transparency is just that it does lead to better patient care. I think it is essential to have an effective quality improvement and quality assurance process that you have to have transparency.
It leads to that basic patient right for more autonomy, it leads to better education for the patient and their family as to what the expected outcomes can be, and views with quality improvement and quality assurance that it can also be used for more efficient use of resources, so reduced cost or applying resources to the areas that you need to have certain improvements. I think this is a win-win all the way around. It has to be done as I mentioned before with the understanding that there is a risk stratification and with the understanding that this is not necessarily a competition between programs. We're not necessarily trying to say this program is ranked 1234; we’re trying to say all programs could have excellent outcomes if they're using the STS database and their transparency to be truthful to the families and to then be truthful to themselves in terms of learning where they have to apply their resources to improve their outcomes.
Dr. Smith: I'm going to thank you for that work that you're doing at Children’s Mercy and also thank you for coming on the show today. You're listening to Transformational Pediatrics with Children’s Mercy – Kansas City. For more information, go to childrensmercy.org. That’s childrensmercy.org. I'm Dr. Mike Smith. Thanks for listening.
Transparency in Heart Surgery Outcomes
Dr. Michael Smith: Our topic today is transparency in heart surgery outcomes. My guest is Dr. James O'Brien. He is the division chief of cardiovascular surgery at Children's Mercy. Welcome to the show.
Dr. James E. O’Brien Jr, MD, FACS: Thank you for having me.
Dr. Smith: Let's start this way. Let's back up a little bit and talk a little bit about why this is an important topic. Why do we need transparency the way that we are beginning to see from programs like your own? What's driving this? Give us a little bit of the history?
Dr. O’Brien Jr.: I think truly what's driving it at its baseline is that families have become much more engaged in the care of their child in terms of their medical care. They're much more knowledgeable, they're much more sophisticated in terms of the issues, and for them to have more for an understanding of that care and for them to be more engaged, it leads to better care for their child. For them to understand that, they need to understand not just the technical details of the surgery or what the plan of care is, but also what the outcomes are and how various institutions are successful or aren’t as successful with those outcomes. On a nationwide level, there's also been a push for this, not just from the consumers and families themselves, but also from the national organizations. Most of that’s been used as a quality improvement and quality assessment tool.
The Society of Thoracic Surgeons, which is one of our national bodies, has for years a very large registry and database that you can then use for your own program to judge how you're doing against the national benchmarks. This is not meant to be a competition between programs, but this is just so everyone’s boat can float a little bit higher if you will so that if you use this as to identify areas within your program that you can improve to relative to national benchmarks, then obviously everyone is going to be able to provide better care. It’s been driving from both of those directions – both from the families demanding more information and becoming more knowledgeable, which is only beneficial to the care of the children, and also based on a national quality improvement initiative.
Dr. Smith: How is this affecting patient care at this point now that we have this large database as more and more programs are participating? How has this so far affected patient care and what's your hope for the future?
Dr. O’Brien Jr.: I think it’s hard to say right now how the transparency has directly affected patient care in terms of each individual program. I think overall what it’s done is it’s led to everyone’s programs being much more cognizant and aware of their own outcomes relative to the benchmarks in improving their program. It’s also led to a better conversation with the families. It’s hard to dumb this down if you will the outcomes for pediatric cardiac surgery like you would for appliances. The STS database does do public reporting and it is done in a platform that utilizes consumer reports, but it's not like going to consumer reports and trying to analyze which is the best car or best refrigerator. The complexity of cardiac surgery and the differences in risk stratification are quite large, so it does require somewhat of an education on the family's part to understand that some cases are more straightforward and have much better outcomes than others and there are still some very difficult congenital heart defects out there that while we've come a long way still have survivals of 80% to 85%, whereas a lot of the others are about 99% to 100%. While I think it's given everybody a structured conversation if you will, it's given people a place to start their conversations of how serious is my child's heart defect, what are the expected outcomes and how does that compare to the national benchmarks.
Dr. Smith: This database, how long has this information been collected, and when you talk about families in this case, are you talking about families directly accessing this type of information on the website or is it really about the pediatric surgeon using that information in their assessments of the child and in speaking during the clinical exams to the families?
Dr. O’Brien Jr.: It's both. The database has been around for over 10 years now and that's been used by the individual programs in terms of understanding how their outcomes compare to national benchmarks. That's been used by the programs individually to improve their outcomes and in discussions with the family to save the expected outcome for your child's specific condition based on a national sample is X. The problem in congenital heart surgery is that the numbers are small. There are so many different conditions that you can have and so many different surgeons that you could have that at anyone's institution, the relative number of procedures done in a given year is small. To give an outcome based on a small end like that is not as valid as if you give it based on its national sample, so you have a much better idea to say based on the national sample, a patient born with ductus arteriosus are going to have outcomes of 90%.
What's happened is more recently in the last three years is that there's been public reporting made available, so now families can go directly to the website at the STS database or we provide it on our own website and many institutions do that to see what the outcomes are. That starts the conversation, you got families coming in to know, do your consultation with them and they’ve looked that up, they know what that is, they know the questions to ask, they want to know what your outcomes are and they want to know what the numbers are that you’ve done. By making that transparent, by making that readily available to the public and to the patients and their families, it really does lead to more patient autonomy and better education and ultimately to improve patient care.
Dr. Smith: How many programs actually are surgical programs throughout the United States belong to this database, and for those that don’t participate in sharing this information, why isn't that they don’t?
Dr. O’Brien Jr.: The program has started on a voluntary basis, so there's a little over 100 programs in North America - Canada and the US - that provide care for patients with congenital heart disease. Of that, when they first did the initial public reporting on a voluntary basis, there were only 18 programs, including our own at Children’s Mercy that decided to put their outcomes out there in the public reporting. It’s now increased to about 2/3rds and I thoroughly expect it to increase more than that. The downside to putting it out there is, one, if your outcomes are not as good as some of the other programs, obviously there's a risk of doing that, and the other is there is a real risk of public reporting that can have some detrimental outcomes in terms of leading to a risk aversion or a deterrence by some of the institutions of taking on the higher risk patients even to the point of denying care to very high-risk patients. That's why you wouldn't participate. It's why if you are a program that does take on high-risk patients, and we at Children's Mercy have always had a policy and a commitment, that we will continue to take care of the higher risk patients. The public reporting has to be done with that understanding, so there does have to be a level of education for the families to say if we're a program that is going to continue to work on the cutting edge and going to take on the highest risk patients, that has to be factored in as opposed to the smaller volume program that's not going to take the high-risk patients – that's going to transfer them out – so their overall outcomes may look quite good, but that's not the question you should be asking. The families should be asking if my child has this specific condition, how is that outcome at your specific institution, and that’s why we have to make sure that we don’t make the rating system too simplistic with just a number of stars like you would for an appliance or a car.
Dr. Smith: I do want to mention to the listeners that Children’s Mercy was one of the first programs to actually participate in this database. Is that correct?
Dr. O’Brien Jr.: Yes, we were, not just to participate, but also to participate in the public reporting.
Dr. Smith: I know your role is an auditor for this database and all this information that is being collected. Tell us a little bit about what your role is there and, in summary, what would you like people to know about transparency and pediatric cardiac surgery.
Dr. O’Brien Jr.: My role as an auditor for the Society of Thoracic Surgeons is that in order to make sure the database is as truthfully as possible is that everyone’s data submissions are audited on a five-year basis. Once every five years, your program is up for auditing. What happens is then the auditors come for the site visit, they review all your data and just make sure that what you're submitting is as accurate as it can be. It’s really meant as an educational process both for the society and also for the programs to make sure that the data that we have is as reliable as it can be. I think the importance of transparency is just that it does lead to better patient care. I think it is essential to have an effective quality improvement and quality assurance process that you have to have transparency.
It leads to that basic patient right for more autonomy, it leads to better education for the patient and their family as to what the expected outcomes can be, and views with quality improvement and quality assurance that it can also be used for more efficient use of resources, so reduced cost or applying resources to the areas that you need to have certain improvements. I think this is a win-win all the way around. It has to be done as I mentioned before with the understanding that there is a risk stratification and with the understanding that this is not necessarily a competition between programs. We're not necessarily trying to say this program is ranked 1234; we’re trying to say all programs could have excellent outcomes if they're using the STS database and their transparency to be truthful to the families and to then be truthful to themselves in terms of learning where they have to apply their resources to improve their outcomes.
Dr. Smith: I'm going to thank you for that work that you're doing at Children’s Mercy and also thank you for coming on the show today. You're listening to Transformational Pediatrics with Children’s Mercy – Kansas City. For more information, go to childrensmercy.org. That’s childrensmercy.org. I'm Dr. Mike Smith. Thanks for listening.