Patient Engagement Tool – The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, has implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading

Making sense of congenital heart surgery data

The Pediatric Congenital Heart Association is committed to empowering patients and families. Patients and families deserve essential information to help make important health care decisions. As this data becomes available it can be very hard to understand.  It is our hope that this resource can help.  For a .pdf version of this document, click here.

When your child has congenital heart disease, at times it can feel like there are so many decisions to make, especially, when faced with surgery or another medical procedure.  During these times of stress, it is important to partner with your child’s medical team.

One key decision you may be thinking about is where your child receives care. More and more information about different hospitals is now available to the public for you to review.  However, understanding this information can be a challenge.

Much of the information to look at includes several different numbers.  Our goal is to describe what some of these numbers mean, offer things to think about when reviewing this information, and encourage you to use publicly available data as “one piece of the puzzle” when making health care decisions.

Above all, please use this information in a conversation with your child’s medical team when making important decisions.

 

A little bit of background

Understanding congenital heart surgery information that is available to the public can be very complicated, even for people who work with the numbers all the time.  We realize you may find that some of this information is difficult to understand.  It is important information and we encourage you to talk with your child’s medical team to help you.

Here, we are going to focus on explaining one specific set of information reported by the Society of Thoracic Surgeons (STS). Of all programs involved in reporting congenital heart surgery information to the public, the STS program is currently the largest.  The information from the STS is also used by other groups who report congenital heart surgery data to the public, including Consumer Reports and US News & World Report.

The STS routinely collects multiple pieces of information about congenital heart surgery to form a database.  This information is often called “data” and includes a variety of different numbers along with other information.

Approximately 120 hospitals around the country who perform congenital heart surgery provide information to the STS database. In 2015, the STS began sharing some of this information on their website for those hospitals that agreed to share their information with the public.

The reporting website can be found at:  http://publicreporting.sts.org/chsd.  This information is updated once a year.  Details from the STS about the information contained on the website can be found here.

 

The STS data

The STS reporting website lists several pieces of information for each hospital participating in public reporting. As you read on, we’ve tried to help you understand what some of the words and numbers mean that you will find on the website. Some of this information may be easy to recognize and understand.  Some of it is more complicated.

In addition to the information below, we have also developed an appendix that can be used with this guide that may provide additional helpful information.

 

Surgeons

The name of each surgeon at the hospital who performs congenital heart surgery was listed on previous versions of the STS website, but is not listed in the current version.  There is a link to the hospital’s website where you may find some of this information.  You may also want to inquire about the surgeon’s board certification and level of experience.  In addition, it is important to remember that the care of patients with congenital heart disease involves multiple team members working together including the surgeon. You can use our guided questions tool as a reference for other questions you may want to ask about the care team.

 

Outcomes

Outcome means the result of the surgery.  For each hospital, information is displayed on deaths after surgery.  These include all deaths that occur during the hospitalization in which the surgery is performed, or death that occurs in any location within 30 days of surgery. All deaths are included – the cause doesn’t matter. Each hospital uses the same criteria, which means they cannot pick and choose which deaths to report.  The STS periodically checks the information to make sure they are not missing any deaths; about 10% of the hospitals participating in the STS Congenital Heart Surgery Database are randomly selected each year to have their data checked or audited.

The STS is also working on developing methods to report other types of important outcomes such as complications after surgery, and the number of days a child stays in the hospital after surgery.

 

Timeframe

The information is gathered about all surgeries that took place at a hospital during a span of the last four years.  Although you may want to see only the most recent numbers, like over the past month or past year, this can have some downsides. Because only a small number of surgeries may be performed over a short period of time by any one hospital, comparing these small numbers may make it seem like there are no real differences. Research studies have shown that putting the numbers together into 4-year timeframes gives the best chance that any differences will become easier to see.

You may want to ask whether the hospital you are considering has had any major changes recently (like changes in surgeons, cardiologists, the unit patients are treated in, etc.), and if so, work with your child’s healthcare provider to understand some of their most recent data.

 

Data Presentation

The information is presented in two ways on the website:

  1. Overall: Overall numbers for all of the congenital heart surgeries.
  2. Separate STAT Categories:  Separated into categories of surgeries as described below.

 

STAT categories

It would be great if the outcome information we are talking about were reported for each specific heart defect or type of surgery, but this can be challenging.  Because there are so many kinds of heart defects, a hospital may not see many of the exact same type of defects in a given year. These small numbers can be hard to understand or compare as described in the section above.  Combining operations together into larger groups or categories (the STAT categories) can help.

To help organize surgeries into categories based on how risky or complex they are, the STS places each surgery type into one of five “STAT” categories. Category 1 includes surgeries with the lowest risk of death, and category 5 includes the surgeries with the highest risk of death. STAT is short for:  Society of Thoracic Surgeons – European Association for Cardio-Thoracic Surgery. These categories were created after looking at 77,294 heart surgeries across North America and Europe.

A brief listing of common types of surgeries included in each STAT category is included in the table below.  More detail can be found in this article:  O’Brien SM, Clarke DR, Jacobs JP, Jacobs ML, et al. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg. 2009;138:1139-53.

 

Common types of surgery within each STAT Category
STAT Category 1 atrial septal defect repair, ventricular septal defect repair, coarctation repair, subaortic stenosis resection, pulmonary valve replacement, conduit replacement
STAT Category 2 Tetralogy of Fallot repair, Fontan operation, Ross operation
STAT Category 3 Hemi-fontan operation, arterial switch operation, complete atrioventricular septal defect repair
STAT Category 4 aortic arch repair, arterial switch operation with ventricular septal defect closure, heart transplant, aorto-pulmonary shunt, total anomalous pulmonary venous return repair, truncus arteriosus repair
STAT Category 5 Norwood (stage I) operation, hybrid stage 1 procedure, double switch operation, truncus arteriosus with interrupted aortic arch repair

 

Mortality Data

Let’s take a look at how the information about death (mortality) is displayed on the STS website:

#/Eligible and Observed:

The first column of numbers on the website shows the following numbers for each hospital:

# – total number of deaths during the 4-year timeframe.

Eligible – total number of surgeries performed during the same timeframe.

This number is particularly important because it tells us the volume or number of surgeries the hospital performs.  See below and the appendix for more information about how to understand this information and why the volume of surgeries a hospital performs is an important piece of information to consider in addition to the number of deaths or mortalities.

Observed – the rate of death calculated by dividing the two numbers above:  the number of deaths divided by the total number of eligible surgeries.

Even though the numbers in this calculation are pretty easy to understand, they should not be used to label the quality of a congenital heart hospital. This is because the types of congenital heart disease and surgeries performed, along with important characteristics of the patients (such as whether they were born prematurely or have some type of genetic syndrome or other medical problem besides their heart disease) can be very different across hospitals. Some hospitals treat a lot of patients with very complex or severe heart disease and other conditions, while other hospitals treat fewer of these patients.  This is known as having a different “case mix”. If you compared only the simple calculations above, some hospitals could have a higher rate of death just because they take care of more complicated and complex patients, not because they are providing lower quality or worse care.

So, in order to better understand how a hospital is doing, more advanced methods are necessary.

 

Expected: 

This column lists the expected rate of death.

This number is calculated from a math formula that is used to predict how many deaths we could expect to see at a hospital when taking into account the severity or complexity of patients they treat. This formula uses information like the type and complexity of the congenital heart surgery performed, and the characteristics of the patient such as how old they are, how much they weigh at the time of surgery, whether the patient has a genetic syndrome or other medical problems, etc.

Importantly, hospitals don’t get to pick their own expected rate, it is assigned for all hospitals based on the information in the math formula created by STS.

The formula is not perfect. It does not take into account every important factor that relates to how complex or sick a child may be at the time of surgery, but it is the best one that has been developed to date and it has been improved and updated over time.

 

O/E (95% CI):

This column lists what is known as an observed/expected (O/E) ratio and a 95% confidence interval.

Observed/Expected (O/E) ratio – This ratio is calculated by using the data described above, and dividing the number of observed or actual deaths at the hospital by the number of expected deaths from the math formula (based on how complex or sick the patients at that hospital are).

If the O/E is 1 – A ratio of 1 means the hospital has a similar number of deaths to what would be expected for the type and complexity of patients that they treat (their case mix)

If the O/E is less than 1 – A ratio less than 1 means the hospital had fewer deaths than what would be expected for the type and complexity of the patients that they treat. Thus, a lower O/E ratio is better.

If the O/E is greater than 1 – A ratio greater than 1 means a hospital has more deaths than what would be expected for the type and complexity of the patients that they treat.

95% Confidence Interval (95%) – The O/E ratio is displayed with what is known as a 95% confidence interval, which is very important. The calculations from the math formulas described above are complicated, and it is difficult to be completely certain about what the exact O/E ratio is. The confidence interval shows the range of numbers where the O/E ratio could fall for each hospital. This range is just as important as the O/E value itself.  Taken together, the O/E ratio and 95% confidence interval is believed to be one of the most important pieces of information displayed on the website.

 

Adj. Rate (95% CI):

This piece of information can be challenging to interpret.  It represents the adjusted mortality rate with 95% confidence interval.  It is calculated from a math equation using some of the information described in more detail above.  It represents what the hospital’s rate of death would be if their results were in theory applied across the entire population of patients within the STS Congenital Heart Surgery Database.

 

Star rating

In an effort to help make it easier to understand the information we’ve been talking about, STS has given each hospital a star rating ranging from one to three stars. This rating is based on the O/E ratio and 95% confidence interval.

One star = More deaths than expected.  These hospitals have more deaths than would be expected based on the type and complexity of patients they treat (their case mix).  Their O/E ratio and entire 95% confidence interval are greater than 1.

Two star = Deaths similar to expected. These hospitals have a rate of death similar to what would be expected based for the type and complexity of patients they treat. Their O/E and 95% confidence interval overlaps with 1.

Three star = Fewer deaths than expected.  These hospitals have fewer deaths than would be expected for the type and complexity of patients they treat. Their O/E ratio and entire 95% confidence interval are less than 1.

Example –

Star rating                   Example of O/E ratio (95% CI)

1 star                                       1.4 (1.1 – 1.6)

2 star                                       0.8 (0.7 – 1.1)

3 star                                       0.6 (0.5 – 0.9)

 

It is important to note that based on the definitions of the star categories described above and the way the math formulas work, the vast majority of hospitals fall into the two star category. This is talked about in more detail below.

 

What does all of this mean?

This information can be hard for families and even providers to understand. There are a few key points to be aware of:

  • Not all hospitals share their data. Of the hospitals currently participating in the STS Congenital Heart Surgery Database, about half currently agree to share their information on the STS public reporting site (see the appendix for more details). If you are considering a hospital that does not report their information you should ask them why. They likely still send their data to the STS Database, but have decided to not share it publicly. You can work with your child’s medical team to ask for the same information that would be posted to the STS website.

 

  • Remember the timeframe of reporting. As described above, there are several reasons why the 4-year timeframe for reporting the information was chosen. You may want to ask whether the hospital you are considering has had any major changes recently, and if so, work with your child’s healthcare provider to understand some of their most recent data.

 

  • Not all outcomes are reported. Current public reporting efforts focus on mortality (death) that occurs in the short-term after surgery. Efforts are ongoing to develop the methods necessary to share information on complications that occur after surgery, number of days in the hospital, and other longer-term outcomes. In the meantime, you should talk about other outcomes that are important to you with your child’s healthcare team and work with them to understand any available information.

 

  • The raw numbers may be easier to understand but they SHOULD NOT be used to judge the quality of a congenital heart hospital. The raw data (#/Eligible and Observed) do not consider the severity or complexity of patients the hospital treats. Some hospitals may have higher mortality rates simply because they take care of sicker or more complex children.

 

  • Use the information that takes into account the type and complexity of patients the hospital treats. The additional information calculated from the math formulas described above is much better to use in understanding how a hospital is performing compared to what would be expected for the type and complexity of patients that they treat. The math formulas allow the calculation of the O/E ratios and star ratings.

 

  • Look beyond the star ratings. There are a few things to know about the star ratings calculated from the math formulas:

Small changes can influence a hospital’s star rating. Any time you group hospitals into categories, a few more or less deaths can cause the hospital to change from one category or group to another. The same is true for the star rating system.  For example, in one reporting period a hospital had an observed mortality rate of 3.7% with an O/E ratio of 0.84 (95% confidence interval 0.66-1.05) resulting in classification as a 2-star center. The year prior, the observed mortality rate was 3.8% with an O/E ratio of 0.8 (95% confidence interval 0.6-0.9) resulting in classification as a 3-star center.

The majority of hospitals are classified in the 2-star category. Because of the way the math formulas used to calculate the star rating work, the majority of hospitals are classified within the 2-star category. There may be important differences between some of these hospitals that you don’t see when you look only at the star ratings.

Use the more detailed information on the STS website. Due to the reasons above it is important to look beyond the star rating to more of the detailed information presented on the STS website. Remember that lower O/E ratios are better, but also that small differences in the O/E ratios themselves may not be important. The confidence intervals around the O/E ratio are just as important to consider because they describe the range of values where the O/E ratio is likely to fall.

 

  • The information on the website can’t necessarily be used to directly compare two hospitals without knowing more of the story. This point is critical to understand.  The math formulas used to calculate the information such as the O/E ratio and star ratings tell us how a hospital is performing compared to what would be expected specifically for the type and complexity of patients they treat (case mix).

 

For example, a hospital can receive a 3-star rating by doing well in caring for a high-complexity patient population (very sick/complex patients), doing well in caring for a low-complexity patient population, or somewhere in between.

A hospital who does well in treating lower complexity patients can’t really be directly compared to a hospital who treats higher complexity patients (sicker or more complex children). It can’t be assumed that this first hospital would have the same success if they were treating the more complex or sicker patients that the second hospital treats.

For this reason, it is important to understand not just the information about the outcomes (the O/E ratios, star ratings, etc.) but also the type and complexity of the patients that the hospital treats in order to make the best judgement.

This is really important especially when deciding where to seek care for a child with more complex heart disease. In this situation, you may want to understand not only which hospitals have good results but whether they achieved these results through taking care of a high complexity patient population. 

 

  • Understanding the type and complexity of patients a hospital treats. So how do you understand this important piece of the information – the type of patients that a hospital treats? There is no “gold standard” or best way to do this that has been looked at in any research studies to date, and it can be challenging to understand based on the data currently presented on the website.  Here is one way to begin to understand this information:

You can look at the number or volume of patients a hospital treats in the high complexity or high risk STAT categories (STAT categories 4 and 5). Remember this information is found under the “Eligible” column described above. A higher number means the hospital treats more of these types of cases.  You can also understand a hospital’s results or mortality information (O/E ratio and 95% confidence interval) specifically for these higher complexity operations by looking at the information presented in these rows of the table for each hospital on the STS website.

 

In addition to helping to put the information above, such as star ratings, in better context, it is also important to note that prior research studies have shown that in general that hospitals that perform a higher number of operations generally have better results, particularly for children who have higher complexity types of heart disease. This is known as the “volume-outcome” relationship.

 

  • More information, including the range of values from hospitals currently reporting on the STS website, can be found in the appendix.

 

How can I use this data?

Publicly reported information can be a useful tool when making health care decisions. However, it is important to remember that the information shared, as well as this guide, cannot by itself tell families where they should seek care for their child.

There are often many things that impact a family’s healthcare decisions and this information is best used as just one tool to help to make those decisions.

We recommend reviewing the publicly reported STS data and the key points included in this guide with your child’s healthcare team as a first step.  Don’t be afraid to ask questions until you understand how this information impacts your child.

For more information, visit www.conqueringchd.org.

 

Authors:

Sara K. Pasquali MD MHS1, Jeffrey P. Jacobs MD2, Michael Kim PhD3, Amy Basken MS4

1 University of Michigan, C.S. Mott Children’s Hospital, PCHA Medical Advisory Board, 2 Johns Hopkins University, Johns Hopkins All Children’s Hospital, PCHA Medical Advisory Board, 3 Parent, PCHA Steering Committee, 4 Parent, PCHA Director of Programs

Acknowledgements:

PCHA would also like to thank editors David Kasnicand Nicolas Madsen MD MPH2

1Parent, PCHA Executive Director; 2Cincinnati Children’s Hospital and Medical Center, PCHA Medical Advisory Board Vice-Chair

 

Mental Health – Beyond Survival, The Struggle with Anxiety and Depression

PCHA continues its series on Mental Health with a piece by nurse and PCHA -VA Board Member, Sydney Taylor. Here, Sydney discusses contributing factors and prevalence of Anxiety and Depression in patients and parents affected by Congenital Heart Disease. 

 

 

 

For the first time ever, there are more adults living with a congenital heart defect than children. This is all thanks to improved medical technology, amazing advancements, and increased knowledge and awareness in treating CHD. While this is certainly incredible news, there are new – and unanticipated – aspects of treating survivors that we must now focus on.

When the field of pediatric cardiology was born, the main goal was to keep patients alive. The beginning

of this delicate science was unfortunately wrought with struggles in patient survival rates. However, as time went on and improvements and advancements in the field were made, patients started living to reach adulthood. But still, the main focus was to simply get these patients to see age 18. On the whole, aspects of everyday life patients may struggle with were – and sometimes continue to be – unaddressed by providers simply due to a lack of research and knowledge.

One of the biggest (and most prevalent) concerns facing CHD survivors is anxiety and/ or depression. Frequent and lengthy hospitalizations, painful procedures, and traumatic surgeries in childhood often lead to profound psychosocial impacts on patients. These impacts can range from minor to life-altering. For example, I can always feel myself becoming anxious when I smell rubbing alcohol or “hospital smell.” I remember this anxiety from childhood, but it had typically been isolated to healthcare-related environments. However, it made the beginning of nursing school and working in the clinical setting very difficult. Other patients may avoid seeking medical attention due to this anxiety, turn to substance abuse to cope with depression, or experience any number of ineffective coping strategies due to a lack of recognition of their unique needs in the medical community.

In a particular study done in adults with CHD, researchers selected patients who appeared to be “well-adjusted”; that is, did not outwardly exhibit signs and symptoms of depression or anxiety. Despite their appearances, 36.4% were found to have a “diagnosable psychiatric disorder, with anxiety or depressive symptoms being prominent [1].” Another study revealed that 18.3% of adolescents (age 12-18) with a heart defect suffer from depressive symptoms, compared with 3.3% of the healthy control group. Additionally, 30% of the adolescent CHD patients displayed anxiety, compared to 10% of the healthy control group [2].

Patients are not the only ones to suffer psychological distress related to their heart defect and treatment experience. Parents of CHD patients are also at risk, and possibly experience greater distress than their children. In a recent study done by the American Heart Association, an estimated 25%-50% of parents experience symptoms of depression and/ or anxiety, “and 30% to 80% reported experiencing severe psychological distress [3].”

There are more factors at play in the development of depression and/ or anxiety in the CHD population than you might think. Patients with more complex defects seem to be at a higher risk of developing anxiety and depression, and interestingly, those who undergo more cardiac catheterizations than others [2]. It has also been theorized that separation from parents due to early life-saving interventions shortly after birth may contribute to psychosocial abnormalities. Other researchers have postulated that early exposure to traumatic events (such as open-heart surgery) contribute to the development of ineffective coping mechanisms later in life. Most intriguing is recent evidence suggesting higher rates of cerebral insult secondary to cardiac dysfunction in CHD patients: in one study, 24% of infants had abnormal brain scans prior to surgery, and a staggering 67% had abnormal brain scans after surgery [4]. Literature is even more scant regarding parental anxiety and depression, but older parents and unemployed parents seem to have a higher incidence of depression [4].

If you or a loved one are struggling with anxiety or depression, it is important to speak with a healthcare provider. Now that heart patients are surviving, we need help in thriving. Don’t be afraid to reach out to someone you trust. You are not alone, and you matter.

 

For an additional guide on symptoms, tips, and when to seek help, please visit PCHA’s Educational Resource on Mental Health. Although this guide addresses parents in particular, the guidance it provides can be applied to patients experiencing difficulty with andxiety, depression, and post traumatic stress, as well. 

 

 

References:

1. Bromberg, J.I., Beasley, P.J., D’Angelo, E.J., Landzberg, M., DeMaso DR. (2003). Depression and anxiety in adults with congenital heart disease: a pilot study. Heart Lung, 32(105–110).

2. Awaad, M. & Darahim, K.(2015). Depression and anxiety in adolescents with congenital heart disease. European Psychiatry, 30(1), 28-31. doi 10.1016/S0924-9338(15)31916-7.

3. Woolf-King, S.E., Anger, A., Arnold, E.A., Weiss, S. J., Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2). doi 10.1161/JAHA.116.004862.

4. Pauliks, L. B. (2013). Depression in adults with congenital heart disease-public health challenge in a rapidly expanding new patient population. World Journal of Cardiology, 5(6), 186-195. doi 10.4330/wjc.v5.i6.186.

 

 

 

Sydney Taylor is a congenital complete heart block survivor, registered nurse, and is the Adult CHD Board Director for PCHA-Virginia. She has required pacemaker therapy since she was 15 hours old. She enjoys coffee and a good book, hiking and kayaking in the beautiful Shenandoah Valley area, visiting national parks, and making friends with any and all dogs.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

Congenital Heart Disease (CHD) impacts about 40,000 newborns a year in the United States. Single ventricle defects are a complex subgroup of CHD, affecting approximately 5 out of every 100,000 newborns. In addition to normal pediatric and adult primary care needs, these patients are impacted by frequent follow up, complex testing, screening, re-interventions, surgeries, consulting providers, and care throughout a lifetime. This care not only impacts the patients, but the entire family system, including siblings, parents, grandparents, and extended family. The Comprehensive Single Ventricle Roadmap is a novel idea stemming from the persistent questions families have brought forward trying to understand the process of single ventricle disease over time and its neurodevelopmental effects.

Speaking from my personal experience as a younger sibling of a single ventricle patient, this kind of guide has been desperately needed for many decades. The first “blue babies” were given options for a better quality of life, and as research and outcomes have improved, these patients are now living into adulthood. Since arriving at Lurie Children’s Hospital in 2016, I am pleased to see the transformation of the idea evolve so promptly into a formal patient engagement strategy (available in English and Spanish) under the guidance of our entire team. I am specifically incredibly grateful to Dr. Kiona Allen and Amelia Aiello who agreed with this vision, making it a reality for patients and families.

Fontan Roadmap

https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/single-ventricle-roadmap.aspx

Guiding Families Through the Journey

Now that you have been introduced to the roadmap, imagine yourself learning about the diagnosis of single ventricle CHD prenatally. The typical excitement and thrill of learning you are on a road to being a parent of a healthy new baby is not the same joy for parents and families faced with an incurable single ventricle disease. The stops along that road and the topics you’ll discuss are critical, important, costly, and personal. The unknowns, outcomes, and trajectory of this road trip are overwhelming to comprehend. Emotions and fears are often high, breaking down the normal anticipatory excitement and joy.

The Comprehensive Single Ventricle Roadmap is not a pathway any parent eagerly seeks out; yet, it is essential to living life with single ventricle disease. It requires thoughtful planning in an already busy family life schedule to organize the daily care that must be performed seamlessly within the diagnosis and treatment of single ventricle disease. This population is only several decades old; thus, the unknowns within single ventricle care are many. Investigating the latest research outcomes is an essential part of the journey — this includes understanding and coping with the lack of care options. Medical science and care have often not evolved fast enough to benefit children with single ventricle disease. Discussions with families about the surgical and other milestones on the journey are not easy conversations. The unique framework of the roadmap provides a visual guide, allowing families a way to understand the disease process. It also allows for valuable transparent discussions about opportunities for positive coping, hope, and fostering resilience along individual family’s pathway.

The Roadmap is not a “cookie cutter” framework meant to fit every family’s story completely; no two patients (and families) will have the same journey. However, it helps families visualize and more fully understand what care throughout a lifetime looks like, and allows families to anticipate major milestones in a specific time span of a child’s life, such as the newborn surgery. Identifying this point in time allows for transitional discussions regarding navigation in and out of acute and chronic care. These conversations often raise questions about the acute issues currently present for the patient and allow opportunities to explain our other patient engagement tools. For more helpful tools follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/home-monitoring-program.aspx

Typical questions from families during the newborn surgery period include:

  1. How will I be able to care for my newborn after surgery?
  2. What is home surveillance monitoring and will I be able to breastfeed?
  3. What if I need to go to the ER or another health care provider?
  4. What does follow up look like in the HeArT clinic (High Acuity Transition Clinic) and the pre-Glenn visit?

Not all stop points are anticipated. A couple examples of unplanned cardiac triggers across a lifespan include a 12-month-old s/p Glenn with moderate to severe AV valve regurgitation failing to thrive on medical therapy. Because of the cardiac issues, this patient moves into the blue circle entitled additional procedures. This may include potential re-operation for valve concerns before the anticipated next surgery in the journey, the Fontan operation. A second example is a 15-year-old s/p Fontan with arrhythmias requiring placement of a pacemaker/AICD that moves into the additional procedures post-Fontan for arrhythmias not responsive to medical management. Lastly, a 40-year-old s/p Fontan with failing function requiring listing for transplant that moves into the additional procedures post-Fontan and in essence trades one disease state for another (single ventricle physiology for transplant).

Striving for Anticipatory Guidance and a Successful Transition to Adult Care

One goal of the roadmap is to provide cardiac anticipatory guidance for families on the normal developmental milestones in life (marked by schoolhouses and graduation caps) and indicates the need for continued cardiac neurodevelopmental screening. The roadmap creates a framework to discuss difficult topics, potential complications, disease trajectory, issues that develop because of single ventricle physiology, and new cardiac concerns. When new issues develop that require attention, we have open conversations with the family that outline goals, medical options, surgical palliation and outcome statistics. Included in the conversation is a diagnosis review utilizing images that are tailored to the child’s individual anatomy to explain the current anatomy and potential next phase of the child’s journey.

The second goal of the Comprehensive Single Ventricle Roadmap is to foster developmentally appropriate health-promoting behaviors as our patients transition to adulthood to enhance the longer term quality of life. In the early-late teen and adult years, decision-making shifts from primarily parent-driven to patient-driven. This can be challenging for all involved. The milestones on the roadmap visually guide patients and families along the valuable process of each child’s maturation, identifies opportunities for transition of care from parents to patients, and highlights ongoing surveillance monitoring of the many consequences of Fontan physiology to achieve the ideal outcome with the best quality of life. This process is individual for each patient and evolves over time. Success is achieved when coordinated, developmentally appropriate, and psychological supportive care creates patients that advocate for themselves in adulthood and maintain the most positive health promoting behaviors in lifeTo see more on developmental Milestones follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Documents/developmental-milestones.pdf

Lurie Children’s Hospital has a creative way of facilitating this transition within the Single Ventricle Program. The pediatric single ventricle clinic overlaps monthly with the single ventricle adults being seen in the Adult Congenital Heart Disease (ACHD) program. This allows for collaboration, a slower transition, and a formal hand off of care over time instead of a more rigid fixed timeline. To learn more on our website, follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/index.aspx

 

 

Michelle Steltzer has 20 years of nursing experience in fields from oncology to pediatric cardiology. She received both her bachelor and master’s degrees in nursing from the Univeristy of Wisconsin-Madison.

Michelle had a critical role in the development of the first home surveillance monitoring program for pediatric cardiology patients way back in 1999. She then worked collaboratively with the Joint Council on Congenital Heart Disease Quality Initiative while employed in Boston. Michelle expanded feeding protocols within congenital heart disease to include breastfeeding.

In addition to having worked at Boston Children’s Hospital and Children’s Hospital of Wisconsin, Michelle now works as a pediatric nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago. Growing up with a sibling with a CHD, Michelle learned by experience and by watching her mother just what services were lacking for CHD families.

 

Becoming a fundraiser for PCHA!

Want to help us Conquer CHD? Become an individual fundraiser to support critical programs at PCHA. It takes less than 5 minutes and is as easy as 1, 2, 3! 

1. Fill out the online sign up form  (45 seconds)

  • Enter your first and last name.
  • Enter your mobile phone number.
  • Enter your email.
  • Click “Become a Fundraiser”.

2. Click the link to complete registration (45 seconds)

You’ll receive a text message and that will guide you to a page where you can complete your registration. This link and the email will be titled “Thanks for becoming a fundraiser!”

Click the link and enter your password.

3. Customize your page (< 3.5 minutes)

The last step is to personalize your page.

  • Upload a picture (a selfie will work!)
  • Set fundraising goal
  • Personal message telling people the impact they can have if they give right now.

Click Save.

Don’t forget to share your fundraising page to social media to get your friends and family involved.

CLICK HERE to sign up and get started!

Congenital Heart Network

The Pediatric Congenital Heart Association (PCHA) is thrilled to announce the creation of our newest program: the Congenital Heart Network.

As we continue to build upon our mission to Conquer Congenital Heart Disease, we recognize the importance of meeting the needs of patients with congenital heart disease (CHD) and their families every step of the way along their journey. Expanding our programming from national activities to local ones is a critical next step. The Congenital Heart Network aims to bring patients with CHD and their families together to provide hope and support to every member of this ever-growing community across the country.

One of the Pediatric Congenital Heart Association’s strategic goals is to develop the foundation for a single congenital heart disease organization to meet the comprehensive needs of those impacted by CHD.

The Congenital Heart Network is the first step toward accomplishing this goal.  The Network will meet the many needs of the CHD community through a single, larger organization.  This program provides new collaborations, significant strength in numbers, and an infrastructure that enhances our ability to improve the lives of those living with CHD.

In addition to virtual, peer-to-peer support communities, the Network will consist of state-based chapters empowered to execute local programming providing education and support directly to CHD patients and their families.

We have been working with a team of committed volunteers with extensive experience in running and managing a national peer support network and look forward to a staged roll-out of this new important program.  As the program continues to grow, I encourage you to communicate with your local support programs to assess whether participation in the Congenital Heart Network would be advantageous to them as we offer some of the following benefits:

  • Provision of tax-exempt status under a group 501(c)(3) exemption;
  • Support in incorporation and annual filing requirements
  • Web page dedicated to information about the Network and contacts;
  • Employment of staff dedicated to the Congenital Heart Network;
  • Educational webinars to assist with management of groups;
  • Access to congenital heart related educational materials to disseminate to local network participants.
  • Additional program materials such as care package essentials

 

We are very excited about this tremendous opportunity to grow the voice of congenital heart disease while better meeting the needs of individuals with CHD and their families.  Together, we are Conquering CHD!!!!

Stay tuned for more information about how individuals can join the Network as we build our peer-to-peer structure.

Interested in learning more about forming a Chapter in your state?

Please contact: Amy Basken – Director of Programs: abasken@conqueringchd.org

or

Melanie Toth – Director:  mtoth@conqueringchd.org;

Megan Setzer – Director: msetzer@conqueringchd.org

 

PCHA 2017 Policy Update

 

Looking ahead to 2017, the Pediatric Congenital Heart Association has spent the last several months developing strategic policy goals that address the needs of the congenital heart disease community, including research, data collection and public health policy.  In the next weeks, along with finalizing these goals, we will be meeting with organizational partners, our legislative champions and advocates, like you, to establish next steps to address these key policy issues in the coming year.

 

 

Our stories matter.  What you can do now:

1) Begin to build relationships: Identify who represents you and learn about them.  Listen to what is important to them.

2) Open the lines of communication – Collect your lawmakers’ email addresses, phone number and contact information for the district office near you.  For newly elected officials, this may not be available until January; however, many have social media contacts via FB and twitter.

3) Share your story.  Introduce them to your world of chronic illness.  Let them know that health issues matter to you.

Completing these steps will lay the ground work for effective advocacy in the months ahead.

We, also, urge you to consider attending the Congenital Heart Legislative Conference in Washington D.C. on March 1-2.  Here you will:

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

As always, we are inspired by the strength of the millions of people impacted by congenital heart disease.  By coming together, we are conquering CHD!

Passion and Progress: A Provider’s Perspective

In July, PCHA is highlighting the need for transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven shared-decision making. Julie Slicker, a member of the PCHA Medical Advisory Board and lead on the Guided Questions Tool, speaks about the importance of transparency from a provider’s perspective. 

“We didn’t know until after our child was born,” “How could we predict what to ask the doctors? We had to just blindly trust in their skills,” “We were so afraid that we felt paralyzed and we didn’t know how to ask the right questions.” These are the parental anxieties that we, as providers, hope to have the power to impact. And today, with the effort of PCHA and their new Guided Questions Tool (GQT), maybe we can. But first, a story.

I will never forget the first time I had the privilege of caring for a child with congenital heart disease (CHD). It was 10 years ago, and the honor I felt being able to care for that child’s nutritional needs has never left me. As a Registered Dietitian (RD), I have had the opportunity to meet with countless other families since then. That said, every provider has a memory of one child that pulls at their heart strings.

He was a tiny infant named Joe, with a family that had no idea they were having a child with CHD and whose unexpected rush to the hospital changed their life forever. Joe’s tiny little round head, his blue lips and fingers, the fear and anxiety his family had to face, the multiple hospital admissions and the surgical interventions he had to endure will remain with me forever. I have heard so many stories over the years that started out the same way: A time that is supposed to be filled with joy and excitement quickly turned to one of stress, anxiety, and a feeling of being overwhelmed and powerless. I wanted to help to heal Joe and take away the pain and worry of his parents. I wanted to make a difference.

Together with PCHA, I feel that we’ve discovered a way to make that difference. A Guided Questions Tool (GQT) was created to facilitate relationship building and transparency between patients, families and their providers when discussing surgical interventions for infants. This tool is designed to result in data driven answers that promote discussion, leading to the balance between accurate information and reassurance. The first phase of this effort included the development of a list of “Suggested Questions” that parents could ask their providers. Parents and medical providers joined efforts and vetted the questions to identify those that reflect quality of care and outcomes. The questions were sorted into categories to address center outcome data, hospital experience and long-term outcomes. The questions were further edited by a multi-disciplinary team of providers and parents to ensure that they would meet health literacy goals and result in a transparent discussion between parents and providers. From this effort, the first true iteration of the GQT was born.

The next step is to test the GQT’s efficacy in practice. We have gathered a multidisciplinary team comprised of four CHD centers from all over the country to validate this tool via surveys for both providers and parents. We plan to initiate this phase next month.

The mere existence of PCHA, and the GQT that they have helped develop, speaks volumes about where we have come from as a discipline practicing in CHD. A nurse scientist colleague of mine who has dedicated her life’s work to improving the quality of life and developmental outcomes of children with CHD once showed me an old tattered notebook that forever changed my perspective on CHD. In this notebook she showed me the meticulous handwriting of one dedicated surgeon’s log of procedures from the 1980’s. This notebook held a list of patients with Hypoplastic Left Heart Syndrome (HLHS), one of the most severe forms of CHD. Written in front of the first 12 names was a capital letter D, denoting the passing of every single one of those infants. The nurse scientist explained the struggles in the early years of the Norwood procedure. Twelve names. Twelve families. Twelve tiny little infants with so much hope … and ultimately twelve deaths due to complications from this poorly understood physiological nightmare. Then miraculously, after twelve failures, there was a name in the book that stood alone; there was not a letter D written next to it.  The thirteenth child lived. And is still living today. This story makes me remember why sometimes failure is a greater lesson than success. It is often said that it is much worse to never try at all than to suffer repeated failure. I cannot imagine the perseverance this cardiac team maintained as they pushed through so much devastating failure. However, it is due to those families and the trust they placed in the medical team that the surgeons learned what they needed to. Yes, these early families lost their infants and have experienced unimaginable pain, but I can only hope they gained solace in the fact that their infant’s death led to the life of thousands more. They changed the course of cardiac surgical history. Today our facility, Children’s Hospital of Wisconsin, proudly touts that greater than 90% of these patients survive surgery to go home with their families. In the 1980’s these babies did not make it through their first months of life, and today our expectation is that most will grow into adulthood.

So, keeping this story in mind, here we stand. We can now save the lives of thousands of individuals with CHD all over the country. Cardiac programs have been built surrounding the ideals of survival and excellent outcomes, but as far as most of us working with CHD families are concerned, it is still not enough. Survival rates are high, we have surpassed that hurdle, and now we are focusing on improving care even earlier, particularly, during the prenatal period. In order to help families navigate the difficult world of congenital heart disease, PCHA, along with other cardiac providers from across the country, have implemented the GQT for this exact reason. This tool elicits discussions among providers and families around transparency and quality of care at cardiac centers. Joe’s family, like countless others, experienced extreme stress, confusion, and anxiety. They had to blindly trust their local CHD program. Our goal with the GQT is to give families a guide to discuss important topics with their fetal cardiologists before their baby is even born. This tool offers a list of questions that inquire about outcomes at each cardiac center, as well as what parents can expect during their hospital stay. Additionally, the GQT prompts parents to ask about what the expected long term results are for their child’s particular lesion. The GQT also focuses on the type and number of procedures children may undergo, the survival rate for their diagnosis, and the type of training and experience that the providers have. This tool will empower parents to ask the right questions, and will prompt providers to anticipate these questions and become knowledgeable about the answers. Utilizing this tool will allow transparency to take place, trust to be built, and knowledge to be gained.

Providers and parents alike push aside their fears and try to maintain hope that each child with CHD will have a positive outcome and achieve the quality of life deserved. It is because of this passion that I believe the field has progressed so far in the last 30 years. As PCHA and four other sites across the country embark on this small initiative to test and validate the GQT, I cannot help but think about the particular surgeon and his team in that notebook, and how they truly changed the world of CHD forever. This tool may be a drop in the bucket in comparison, but we aim to continue raising the bar for families with CHD to help support and empower them as much as we can.

It is truly an honor and a privilege for all of us that work with CHD families to help change the world – one CHD family at a time.

Julie Slicker MS RD CSP CD CNSC with edits by Sydney Allen, MPH


Julie SlickerJulie Slicker is currently the Quality, Outcomes and Research Manager of the Herma Heart Center at Children’s Hospital of Milwaukee in the Division of Cardiology. Julie has been at Children’s Hospital of Wisconsin since June 2006. Pediatric nutrition for infants with complex congenital heart disease is Julie’s passion, and since 2006 she has dedicated her time to caring for the nutrition of this patient population. In conjunction with patient care, Julie’s research focuses on hypoplastic left heart syndrome (HLHS) and single ventricle physiology. She pursued her Master’s Degree at the Medical College of Wisconsin in Clinical Translational Science and graduated in 2013. She is currently pursuing a degree as a nurse practitioner in order to  continue her work in the cardiac ICU, caring for the patients she has come to cherish over her career thus far.

Blog photoSydney Allen is a Program Coordinator for the Herma Heart Center at the Children’s Hospital of Wisconsin, focusing on quality improvement initiatives. Many of her projects revolve around improving patient outcomes, patient satisfaction, quality of life, and optimizing clinical process flow. She obtained her Master’s in Public Health Nutrition in 2014 and when she’s not busy working on healthcare quality improvement, she enjoys recipe testing in her kitchen to find simple, delicious, and nutritious plant-based meals to share with her friends and family.

Press Alert: Announcing New Partnership with Rapid SOS

·

RapidSOS Logo Transparent     PCHA-2C-V

 

RapidSOS and the Pediatric Congenital Heart Association partner to provide enhanced access to emergency services

  • 240 million[1] 9-1-1 calls are made every year in the U.S.; over 70%[2] are from mobile phones, which fail to provide exact location to emergency dispatchers
  • 40,000 infants are born in the U.S. each year with Congenital Heart Disease (CHD), nearly 1 in 100 newborns; those affected with CHD have 3-4 times higher rates of ER visits than the general population[3]
  • Haven represents a transformation in access to emergency services – from a phone call solely dependent on voice to a robust data connection for voice, text, medical/demographic data

 

FOR IMMEDIATE RELEASE – Madison, WI. (July 11, 2016).

The Pediatric Congenital Heart Association (PCHA) today announced a partnership with RapidSOS, an advanced emergency technology start-up revolutionizing personal safety and family connectivity. The partnership will offer access to the RapidSOS Haven app at a reduced price, providing individuals with enhanced access to emergency services. Haven sends important data to 9-1-1 to aid in fast emergency response and better situational awareness for first responders.

 

Working together, RapidSOS and PCHA will support those with CHD and their families, by connecting them to their loved ones and providing peace of mind that emergency help is one touch away when they need it. With one tap on Haven, the app connects the user with the nearest dispatch center anywhere in the contiguous U.S., while providing a voice connection and a data pipeline to 9-1-1, to transmit:

 

  • GPS location
  • Type of emergency
  • Relevant medical and demographic data
  • Text messages: Haven speaks the text message if the dispatch center does not have the capability to receive texts. Currently works one-way (user to 9-1-1); two-way coming in future

 

When setting up the app, users conveniently enter all medical conditions, allergies, and medications, so that if an emergency occurs, life-saving information is communicated directly to 9-1-1. Additionally, after an alert has been triggered, Haven notifies emergency contacts, so that family and friends are informed.

“This partnership with PCHA supports an important community who live with far greater medical needs than most,” said RapidSOS co-founder and CEO Michael Martin. “Those with CHD and their families deserve a robust and reliable connection to emergency services, and Haven provides that.”

 

The Haven app also includes access to RapidSOS’ Family Connect feature. For the first time, people can call 9-1-1 on behalf of a loved one, transmitting their loved one’s location and relevant data directly to the dispatch center closest to them. Additionally, Family Connect allows users to share their location with loved ones, see family members’ real-time locations without the distraction of a phone call or text, and easily ask family and friends for help. A user can choose who can see their location and when it is shared, ensuring privacy and control.

 

“The Haven app offers a helpful hand to families living with CHD,” said David M. Kasnic, Executive Director of PCHA. “Being able to transmit important medical information with one touch can help those with CHD get appropriate care that is more tailored to their distinct needs.”

 

RapidSOS is offering Haven at a 20% discount to those associated with PCHA when they sign up here. The Haven app is available for iPhone and Android devices and works anywhere across the contiguous U.S. and Hawaii, with one touch emergency calling in over 250 countries and jurisdictional territories. For more information about RapidSOS and the Haven app, visit www.rapidsos.com.

 

About RapidSOS

RapidSOS was formed in 2012 by a team of M.I.T., Harvard, and Stanford grad students who had personal experiences with the challenges of the existing emergency communication infrastructure. Working closely with the 9-1-1 community, tech and telecom companies, and leading investors, RapidSOS is developing technology to predict and preempt emergencies before they occur, dynamically warn people in harm’s way, and ensure that first responders are one touch away globally. Learn more at www.RapidSOS.com

Contact:

Regina Jaslow

rjaslow@rapidsos.com

(347) 879-0024

 

About Pediatric Congenital Heart Association

The mission of Pediatric Congenital Heart Association (PCHA) is to “Conquer Congenital Heart Disease (CHD)”.  PCHA was founded on the key purpose to be the resounding voice of the pediatric patient population and are accomplishing this through collaboration with patients, parents, providers, and partner organizations. PCHA is improving quality and outcomes through CHD education, research and awareness, all while reducing the impact of congenital heart disease while striving to realize a world free from it.

 

Contact:

Amy Basken

abasken@conqueringchd.org

608-370-3739

 

###

 

 

[1] National Emergency Number Association. http://www.nena.org/?page=911Statistics

[2] National 911 Program. Review of Nationwide 911 Data Collection. http://www.911.gov/pdf/current911datacollection-072613.pdf

[3] Pediatric Congenital Heart Association. http://conqueringchd.org/

Make your call for help do more! Subscribe to Rapid SOS – Haven

PCHA is excited to partner with Rapid SOS and their Haven mobile app, to help keep you and your loved ones safe.

Haven App

With the press of a button you can contact emergency services, share key information about location and medical history, and alert your emergency contacts. Perfect for families of children or adults with congenital heart disease.

Medical Information

As part of our partnership, we are able to extend a special offer for 20% off they already low subscription rates, including plans for less than $20/year.

Click to sign-up and save

But don’t take our word for it:

“This app was easy to download and enter important information about Nicholas’ heart defect. We travel a lot and I feel better knowing that wherever we are, the first-response team would have the information they need about his health before they even arrive!” – Amy


More about RapidSOS:

Q: What is RapidSOS?

A: RapidSOS is an emergency technology company founded by graduates of M.I.T., Harvard, and Stanford, all of whom had personal experiences with the challenges of our country’s aging 9-1-1 infrastructure. RapidSOS’ technology platform provides improved access to 9-1-1 and emergency services, as well as other features that improve mobile security and family connectivity.

 

Q: What is Haven?

A: Haven is a smartphone app developed by RapidSOS that allows users to call 9-1-1 more effectively. Calls from the Haven app are routed directly into the correct 9-1-1 Public Safety Answering Point (PSAP). This is a significant improvement over the current situation, in which wireless calls are routed based on cell tower or routed to a dedicated wireless 9-1-1 center affiliated with the Highway Patrol or State Police and then transferred. Instead of just delivering basic cell tower information like a wireless 9-1-1 call, Haven sends more precise and comprehensive information to 9-1-1.

 

With one touch, Haven places a 9-1-1 call and transmits vital information to the dispatcher, including type of emergency, precise user location based on a variety of sensors on the smartphone, relevant medical and demographic information. The app makes it possible to send text messages to 9-1-1 and communicate when it’s difficult or dangerous to speak. Through better data, Haven improves the situational awareness of call takers and dispatchers, so that they can make more informed dispatching decisions to send appropriate responders, providing more comprehensive information about the incident.

 

After a 9-1-1 alert is triggered, the app notifies emergency contacts so that they are informed of the emergency. Haven also includes access to RapidSOS’ Family Connect feature. In addition to the emergency capabilities, Family Connect allows users to share their location with loved ones, see family members’ real-time locations, and easily call 9-1-1 on their behalf.

 

Q: What problem is RapidSOS/Haven solving?

A: Over 180 million[1] 9-1-1 calls come from mobile devices annually, all of them providing limited or no location information, and relying solely on the caller’s ability to speak and ability to articulate their location. The 9-1-1 system was originally built for landline phones and isn’t currently equipped to leverage the full capabilities of modern smartphones. RapidSOS makes it possible to send mobile data (location, type of emergency, demographic/medical information) directly to PSAPs to assist first responders in life-saving efforts.

 

Q: Even small children know to call 9-1-1. Will people adapt from such a well-known process?

A: Millennials and the generation that follows them are now growing up with reliance on smartphone technology, and have embraced apps for everything from ordering dinner to getting from one place to another. Haven will complement this lifestyle, and its simple user interface means everyone can use it intuitively.

 

Q: Is this a replacement for the existing 9-1-1 system?

A: No, RapidSOS does not replace 9-1-1 or compete with 9-1-1. In fact, RapidSOS is working closely with 9-1-1 Public Safety Answering Points (PSAPs) across the nation to make sure that their technology is effectively integrated into the current infrastructure. RapidSOS enables the dispatch centers to receive more information about callers quickly, which can only improve emergency response and care.

 

Q: Will making this transition require an investment of government money for PSAPs?

A: RapidSOS’ technology integrates seamlessly with the existing 9-1-1 system. This means no new training, equipment, or cost is required.

 

 

Q: What makes Haven different from other emergency apps out there?

A: RapidSOS spent three years developing an emergency telecommunications platform that allows smartphone devices to route calls to the correct 9-1-1 center and transmit life-saving mobile data. No other app is directly integrated into the 9-1-1 system. Some apps use a third party call center operated by a private company that could slow down response or introduce human error. Other apps require the 9-1-1 center to license and install a proprietary software solution at a prohibitive cost to government agencies. In general, these apps do not have broad adoption or support from the 9-1-1 community because they are either ineffective, or very expensive without providing pertinent real-time data in an emergency.

 

Q: Does RapidSOS share/sell personal data that users entered into the app or user portal?

A: The information input in the user portal or the app is only shared with 9-1-1 dispatchers and only when a user has initiated a 9-1-1 call.

 

Q: Will Haven work if there is no cell coverage?

A: Haven works over cellular data or WiFi data, as opposed to a traditional wireless 9-1-1 call that only works over a cellular connection. RapidSOS intelligently manages the connection and always uses the most robust communication channel possible. If there is no WiFi or data, the app initiates a native 9-1-1 dial through the wireless carrier, so that the caller can always reach 9-1-1 under any circumstances.

 

Q: The app allows users to text 9-1-1. How does this work?

A: Currently only 6%[2] of PSAPs in the nation have deployed technology that allows anyone to send a text message to 9-1-1. Haven enables all users to send information to 9-1-1 via text message, regardless of the PSAP’s ability to receive texts. Haven will speak the text to the dispatcher (text-to-speech) and the dispatcher can respond or ask follow-up questions verbally.

 

Q: What’s the cost for the app? And how will lower income families afford it?

A: RapidSOS is committed to making the app available to anyone who needs it through the Safer Together Movement (with no questions asked, any user can have the service for free). For those who can afford it, Haven is available from the App Store or Google Play store with a 30-90 day free period. After the free period, individual plans are $2.99/month or $29.99/year while family plans are $4.99/month or $49.99/year. Family plans enable a user to add family members at no additional charge.

 

Q: What happens after the free period is over or if users do not pay for the subscription?

A: RapidSOS will contact the users and ask if they want to continue using the app with a paid subscription. Those who cannot afford the plan at the time can sign up to receive the plan for free as part of the Safer Together Movement. If a user does not have a valid subscription (during free period or paid subscription), the app will direct the user to their native dialer to call 9-1-1.

 

Q: If I have trouble using the app, or have suggestions or questions, how do I get help?

A: RapidSOS has several instructional videos on their YouTube channel that show you how to use the app. You can submit any feedback or suggestions within the Haven app by selecting “Support and FAQ” from the menu, then tapping “Feedback.” Additionally, you can log in to your account at RapidSOS.com to submit your suggestions, feedback, or questions within the Support Center. You can also search the knowledge base of frequently asked questions in the Support Center.

 

[1] National 911 Program. Review of Nationwide 911 Data Collection. http://www.911.gov/pdf/current911datacollection-072613.pdf

[2] http://www.911.gov/pdf/Stateof911webinar_December2015.pdf