Arrest on the Run: How a Penn MPH Student Saved a Life Using CPR

On Sunday, May 3, 2015, Kelsey Sheak, a 2015 Master of Public Health Candidate at the University of Pennsylvania, woke up and prepared to run the 10K Broad Street Run.  Shortly after starting the race, she noticed a crowd gathering around a collapsed man. Upon arriving at his side, Kelsey immediately put her CPR training into action.  Kelsey was one of the many bystanders who helped this fallen runner survive from his cardiac arrest.  Read her full story below.


 

Kelsey Sheak, 2015 MPH Candidate

Kelsey Sheak, 2015 MPH Candidate

CPHI: We heard you performed a life-saving procedure at the Broad Street Run on Sunday, May 3, 2015.

Kelsey Sheak: I did!  I was running and between miles 2 and 3 I saw a crowd of people. There was a gentleman in the center of the crowd and he was clearly having a medical emergency.  Shortly after I arrived, he lost his pulse.  Once he lost his pulse, a group of bystanders and I started administering cardiopulmonary resuscitation (CPR).  We communally performed CPR – one person would start, another person would step in, and so on.  After about ten minutes in, the Philadelphia Police Department came with an automated external defibrillator (AED). The police are trained on how to use AEDs and to provide emergency medical care. They took over for all the bystanders and the patient was shocked and taken to the hospital.  We were sent on our way and told to continue running. It was a little weird!

CPHI: Let’s back up for a minute. You are a Master of Public Health (MPH) student, but clearly you are well trained in CPR. What is your background?

KS: It’s crazy because 40,000 people ran the Broad Street Run and for me to come upon this is just mind-blowing – really serendipitous.  My background is in cardiac arrest research and education.  By profession I spend my days learning as much as I can about CPR and ways to improve it, ways to disseminate it, and ways to make survival much better.  To come across this situation where I needed to use it was crazy.

CPHI: Who were other bystanders?

KS: Most of the people that were helping the collapsed runner had medical backgrounds: nurses, a physician, and me.  The most important take-home message is that he didn’t need a medical professional; he just needed someone to recognize that he was in cardiac arrest and that he needed CPR.  Anyone who is trained can do that.  If you’re not trained in CPR, you should be!

CPHI: How was it meeting the collapsed runner the next day in the hospital?

KS: I went to the hospital after he arrested and I was able to meet his family.  They were very nice and very thankful.  I’m happy to know that he will go back to having a normal life.

CPHI: I want to take a moment to address a common misconception: many people think a heart attack is the same as a cardiac arrest. Can you help clear up this confusion?

KS: A cardiac arrest is when your heart stops and blood flow stops to the entire body.  With a heart attack, your heart doesn’t stop; rather, there is a blockage. Generally, people who have a heart attack have chest pain, they go to the hospital, and they can recover.  Cardiac arrest generally happens with little to no warning and people are generally healthy when it happens.  It can happen for a lot of different reasons and everyone’s reason is different.

CPHI: Is there a most common reason why cardiac arrest happens?

KS: There isn’t a most common reason – but there are situations that are most savable.  The gentleman at the race had a savable arrest because he had a shockable arrest.  This means that his heart was in a rhythm that a defibrillator could recognize and turn into a healthy heart rhythm.  Places like airports, casinos, and races are places where lots of cardiac arrest victims do well – there are numerous educated people around and these places are heavily watched. But there are also places where people don’t do well – like low-income neighborhoods, which are less likely to receive bystander CPR.

CPHI: After you helped save a fellow racer, did you continue running?

KS: Yes, I finished the race!


 

For more information about CPR and cardiac arrest, please visit the Penn Medicine Center for Resuscitation Science website.

Event Recap: The State of the State: Opioid Use and Misuse in Philadelphia

It was a pleasure to hear two inspirational people – Dr. Brian Work (MD, MPH) and Ms. Samantha Gross (JD, MPH) – talk about their paths to and work in community health at the Service Link, MedX, and Wharton Undergraduate Healthcare Club (WUHC) speaker event on Friday, April 10, 2015. My reflection can best be captured by the following lessons in career paths and working with community health.

Brian Work & Samantha Gross

Brian Work & Samantha Gross

On your journey to community health, remember:

  • Take advantage of serendipity
  • Nothing is irrevocable
  • Appreciate conversations / advice from people (even if unsolicited)
  • Participate in community work now! It’s called “practicing” medicine for a reason – it needs to become a habit. Life will already be full if you don’t prioritize community work now.

Community work embodies how medicine can improve with an interdisciplinary approach:

  • Community work makes Brian a better hospitalist
  • Community allows for engagement with a more diverse setting with more collaboration (e.g., medical-legal partnerships) instead of becoming too focused on a comfortable setting and subsequently isolated
  • Both medical treatments and legal policies are about harm reduction!

speaker event aprilAll of these insights and more were facilitated by our smooth moderator – Matthew Kearney – and packaged through Brian’s exuberant charm and Sam’s calm confidence. Look out for more at Service Link’s next speaker event (once per semester).

 

Written by: Neel Koyawala, Class of 2015 College of Arts and Sciences and the Wharton School at the University of Pennsylvania undergraduate student

Fellow Feature: Gala True, PhD: Improving the Lives of US Veterans through Community-based, Participatory Research

Gala True, PhDGala True, PhD is a medical anthropologist and folklorist whose research employs community engaged research approaches to improving access to and engagement in care. She has spent the past 5 years collaborating with U.S. Veterans of the wars in Iraq and Afghanistan on participatory action research to reduce barriers to care and improve post-deployment reintegration. She recently received funding from the Department of Veterans Affairs to build on that work through a photovoice project to engage Veterans with traumatic brain injury and their family members in efforts to improving patient-centered care in VA and community health settings. 


Dr. Gala True’s work focuses on the use of visual and narrative methods in community engaged research, particularly with veterans of the wars in Iraq and Afghanistan. Her recent work has focused on understanding barriers to mental health care for veterans, and how we can address those barriers both within the VA and outside the VA. Using a community-based participatory approach, her work actively engages veterans and is very heavy on the advocacy side.


 About the Work

CPHI: Tell us about how you got started working with veterans.

GT: I received my PhD in folklore from Penn, so from the very beginning of my training there was always an emphasis on the power of people being able to share their stories, and the importance of understanding how identity and community impact the way that people think about health, healing, and illness. From the moment I started at the VA about 8 years ago, I absolutely loved working with veterans. No matter how many times I think I’ve heard their stories, they’ll look at it from a different angle and say something powerful – I feel like I’m constantly learning.

“No matter how many times I think I’ve heard their stories, they’ll look at it from a different angle and say something powerful – I feel like I’m constantly learning.”

CPHI: How has this worked helped you describe public health challenges faced by veterans?

GT: The biggest public health concern comes from the fact that what a veteran is experiencing may be different from someone who didn’t serve, whether it’s a physical health problem, a mental health problem, or a work-related issue like transitioning back into the workforce. Health professionals and healthcare organizations need to be aware of what the special issues might be for veterans, and also what the resources are. There is an abundance of community and VA resources along with government funding and effort behind meeting the needs of veterans, but the issue is often about connecting veterans to these services.

CPHI: Describe your current research and advocacy projects.

GT: Currently, my work focuses on the use of visual and narrative methods in community-based research, particularly with veterans of the wars in Iraq and Afghanistan. I have done a life-story study with veterans who served in Iraq and Afghanistan to understand how they see trauma experiences during deployment to combat. The work focuses on how they see those traumas as fitting within the life-course of their entire life, and how they think about moving forward and recovering from those traumas. I have directed a photovoice project, using community based participatory research methods, with veterans who served in Iraq and Afghanistan, and it’s been going on for about 3 years now and has been very heavy on the advocacy side.

CPHI: Can you provide examples of the types of products that result from these projects?

GT: The first kind of products that came out of the project was this exhibit of veterans’ photo narratives that tell their stories of military service and homecoming and seeking care and moving forward with their lives after military service. The advocacy part has been that veterans in the project have remained very engaged in thinking about what could be done to improve post-deployment care for themselves, their veteran colleagues, and their community, and what could be done to support reintegration into their communities. We present together to healthcare providers and policymakers both within and outside VA, to advocate for the healthcare and reintegration needs of post 9-11 veterans.

Understanding Barriers to Care

CPHI: How have the stories helped understand barriers to healthcare among veterans?

GT: Veterans’ reflections on how their military service and experiences impact on their physical and mental health have led to a more nuanced understanding of the barriers they face to getting the healthcare they need– mental healthcare in particular—and how we can address those barriers both within the Department of Veterans Affairs (VA) and outside the VA. In a recent paper in Qualitative Health Research, we found that veterans talked about stigma as a barrier to care, but it was a much more complicated concept for them, and some of the stigma they were talking about was the stigma they encountered from health care professionals.

CPHI: Can you discuss the barriers to mental healthcare described in your recent paper?

GT: A few common themes have come up with in the paper we just published. Some of these themes include:

#1: Aspects of military culture and identity can deter health seeking

The military is a total institution where you go in with the purpose to break down your civilian identity and build you back up into the identity of the soldier, Marine, Airman, etc. Veterans are taught not to complain about physical ailments, and in fact to blast through any pain, and this can contribute to them being resistant to acknowledge mental health symptoms or distress. There is also this de-emphasis in the military on the needs of the individual, and an emphasis on stoicism and self-reliance, which gets solidified during deployment. Veterans who are deployed will often be so focused on survival and watching out for the person to their right and to their left that they’re not thinking about their own health. There’s a concept called ‘battlemind,’ which is like a state of mental toughness that’s instilled during military training, solidified during deployment, but also continues beyond coming home; it can really have an impact on how veterans view their symptoms or report them to others.

#2: Symptoms and coping strategies as barriers to care

A lot of veterans come up with short-term coping strategies for things like insomnia, anxiety, panic attacks, and depression through alcohol, drugs, and self-isolation – ‘I’m going to stay in my apartment and won’t go out, then I won’t have any bad encounters.’ Unfortunately, their symptoms and coping strategies can be impediments to getting mental healthcare. For example, sometimes someone will have an appointment, but he/she will wake up and will feel incapable of getting in the car or dealing with the stressors of driving, going in confined spaces, or going into a healthcare setting. Veterans are very self-aware that those are short-term solutions – they don’t think ‘oh this is great! – Rather, they don’t necessarily know how to get from the short-term coping mechanisms into treatment or into longer-term, more adaptive coping mechanisms.

“There’s a concept called ‘battlemind,’ which is like a state of mental toughness that’s instilled during military training, and that state of ‘battle mind’ is really solidified during deployment, but also continues beyond coming home. “

#3: Negative healthcare encounters may deter treatment

A lot of veterans have stories about going to seek help and coming up against bureaucratic issues in terms of scheduling an appointment, feeling judged by people within the healthcare system, and having what might be thought of as “anti-patient centered care experiences” – such as women being perceived as they couldn’t possibly have been in a combat situation. Veterans discussed being stereotyped during healthcare encounters where they would be very well-groomed and well-dressed externally, but internally they were falling apart; they would hear comments from healthcare providers such as “well, you can’t be doing that badly—you’re young and fit.” There is a tendency in mental health to assess grooming and eye contact as signs of whether or not someone is in distress. This doesn’t take into account that many veterans continue to carry themselves with a military bearing long after separation from the service, even if they are experiencing mental health issues.

CPHI: How is Sandra Bloom’s (2013) work on the concept of sanctuary trauma relevant to your findings?

GT: I first heard about Bloom’s concept of sanctuary trauma from a colleague, and it felt very relevant to the narratives we were hearing from veterans about negative healthcare encounters they experienced when seeking treatment for their post-traumatic stress. Essentially, the concept outlines what happens when someone who has experienced a trauma seeks help, and they have negative encounters with the people and institutions that are supposed to be helping them; it’s deeply re-traumatizing for many patients, and can deter them from seeking further care. For example, veterans described how traumatizing it could be to be asked questions about suicidal thoughts, symptoms of post-traumatic stress, and experiences of military sexual trauma or combat related traumas. While providers might see these questions as routine—and they are important questions to ask—veterans observed the damage that can happen if they aren’t asked in the right language and the right setting. It’s a great argument for the importance of patient-centered care.

Benefits and Relevance in the Field

CPHI: What are the benefits of this methodology for veterans?

GT: Photovoice is a really powerful way to get into topics such as stoicism, the ‘battle mindset’, and self-identity. Veterans are able to reflect on these topics, articulate them, and then share them with each other. Additionally, using the photos and photovoice method allows veterans to reflect in a way that survey-based studies haven’t necessarily been able to dig into. For this project, a really important part of photovoice was the idea of empowering veterans and enabling them to be collaborators in the research.

“For this project, a really important part of photovoice was the idea of empowering veterans and enabling them to be collaborators in the research.”

CPHI: How are these findings relevant to public health and healthcare practitioners?

GT: First, we provide military competency training to providers and use real stories to help illustrate the gap between what providers know about military culture, what veterans might have experienced during a deployment, and what resources are available for support. We focus some of our efforts on non-VA providers since about half of veterans who are coming home from these recent wars are seeing providers who are outside the VA.

The other part is to try to make the VA a more patient-centered place for these recent combat veterans. We’ve been doing that by presenting our findings nationally to VA healthcare providers, staff and leadership. Additionally, our photovoice exhibit travels to different VAs and this encourages dialogue between VA providers and staff with veterans about creating more veteran-centered care.

CPHI: What new/upcoming projects are you working on?

GT: We just received a 3-year award from the VA to continue this work with veterans who served in Iraq and Afghanistan, but with a focus on veterans who experience mild to moderate traumatic brain injury. These individuals make up a population that has a lot of unmet needs and photovoice will be an important means for them to access and describe their experience. The most exciting part of this new project is the inclusion of a care partner for each veteran, such as a family member, or close friend who’s most involved in supporting them in community reintegration. Their stories and experiences are just as important as the veterans’ but often go unheard.

CPHI: How can I find out more?

From War to Home Resource List

Warring Identities: Identity Conflict and the Mental Distress of American Veterans of the Wars in Iraq and Afghanistan

“This Is The Story of Why My Military Career Ended Before It Should Have”: Premature Separation From Military Service Among US Women Veterans

Make Penn Your Gym!

Make Penn Your Gym table on Locust Walk

Make Penn Your Gym table on Locust Walk

 

We recently celebrated National Public Health Week (April 6-10) – with a twist! The Center for Public Health Initiatives (CPHI), Penn HR, Student Health Services (SHS), and the Penn Public Health Society (PPHS) collaborated to present “Make Penn Your Gym” to Penn’s campus. This pilot campaign was based on “Make NYC Your Gym”, a program dedicated to showing New  Yorkers how they can take advantage of the surrounding built environment, get in their necessary exercise, and fit daily activities into busy schedules. Added bonus: it’s free! No gym membership required.  For “Make Penn Your Gym”, SHS identified various jogging routes (1-, 2-, and 3-miles) throughout Penn’s campus and University City. PPHS and CPHI then designed and printed trifold maps of these routes, which were distributed from a table on Locust Walk between April 6th and April 10th. The table also featured some public health “swag” – travel hand sanitizers, SPF 23 lip balm, granola bars – as well as a simple survey for those interested (for example, “How could YOU make Penn your gym?”). Going forward, those survey responses will help shape the future of “Make Penn Your Gym”. Thank you to those who participated and stay tuned for more opportunities to “Make Penn Your Gym”!

Written by: Matthew Kearney, MPH Candidate 2016

Fieldwork in Bosquet, Cameroon

Meagan Rubel & research participant

Meagan Rubel & research participant

In the week that I have been doing field work in remote rainforest village of Bosquet in east Cameroon, I have become extremely proficient at asking people if they are able to give a fecal sample. I recognize that this is a strange thing to be “proficient” at, but me and the team that I am working with will have to do this hundreds of times to get enough samples as part of my and the Tishkoff Lab’s research. Walking people discreetly to a side of the school we are using for “base operations” this week, I ask them in my fledgling French, “Vous pouvez faire des selles?” (Can you make stool?). For people who agree, I hand them a new, sterile plastic container with a lid and provide them with toilet paper. After this, we will freeze a portion of the sample in liquid nitrogen for analysis and use another portion to do fecal microscopy directly in the field to identify any infectious agents present in the stool, which can then be treated by a physician working with our collaborators at the University of Yaounde 1.

Sunset with the Baka in the village of Bosquet, Cameroon.

Sunset with the Baka in the village of Bosquet, Cameroon.

I’m here for two months with eight other team members- one, Dr. Alessia Ranciaro, is a senior research scientist in my lab, and our other colleagues are from Cameroon. We are conducting research as part of Dr. Sarah Tishkoff’s investigations into phenotypic (what you see when you look at someone) and genotypic (a person’s genetic makeup) variation in diverse Cameroonian populations. I’m also collecting fecal samples for my PhD research on the gut microbiomes (the microorganisms in your gut including bacteria, fungi, and archaea that have functions in many aspects of our physiology, including immunity and digestion) of Cameroonians practicing different kinds of subsistence, with a focus on how infectious gut parasites, including various soil transmitted helminths and schistosomes endemic to the region may have a role in shaping the composition and diversity of the gut microbiome. This fieldwork will also be part of the required field experience for the MPH degree at Penn.

A Baka woman balances a bucket of water on her head, retrieved from the local covered well.

A Baka woman balances a bucket of water on her head, retrieved from the local covered well.

Cameroon is a country of immense cultural, linguistic, and environmental diversity, with populations that practice pastoralist, agriculturalist, and hunter-gatherer subsistence and have diverse diets. The people of Bosquet are Baka, a recently settled hunting and gathering group of approximately 2,000 people. Their ethnic group, along with those of other equatorial African rainforest hunter gatherers, are more commonly known as pygmies due to their short stature, although this term is considered pejorative by many Baka. Nowadays, the Baka live primarily in mud brick huts with dirt floors, and have very limited access to electricity. While many of them have small gardening plots to cultivate yams, cassava, plantains, and bananas, and they no longer travel in small, mobile bands through the forest, they still rely heavily on the forest to hunt bushmeat such as antelope, giant forest rats, and monkeys, in addition to providing various wild fruits and honey, and several traditional medicines to treat common (and potentially life threatening) ailments such as malaria and diarrheal disease. The Baka of Bosquet have access to a covered well, which provides them with a source of clean water for drinking and bathing, although streams are often used, too.

Cassava (manioc), a dietary staple of the Baka, being harvested and prepared.

Cassava (manioc), a dietary staple of the Baka, being harvested and prepared.

All of these dietary changes we are observing in indigenous groups are important to understanding the structure of the gut microbiome; some groups may possess certain kinds of bacteria that have allowed them to better digest particular kinds of foods as an example of adaptation to local environments. As their diets and health change, we can hypothesize about the kinds of shifts we may see in the microbiome, and consider the downstream implications for disease. For instance- as groups like the Baka become more settled, and potentially rely less on foraging in the rainforest and increasingly eat processed foods, will their gut microbiomes start to look like those of neighboring Bantu agriculturalist groups? This has implications for the kinds of chronic diseases we may begin to see in many of these groups.

Presently, some of the greatest threats to Baka health are issues like food scarcity, access to clean water, infection with intestinal worms, malaria, hernias, HIV, and tuberculosis. The nearest major hospital is over an hour away in the town of Lomie, so the team has brought a doctor to help treat the Baka, who can elect to receive free medical treatment regardless of whether or not they partake in our research. Cameroon has a national deworming campaign that provides periodic, free deworming agents, but populations like the Baka, who live far from major cities in dense rainforests traversable primarily by rough dirt roads, are often logistically hard to treat. The medications provided to the community of Bosquet will be able to alleviate some of their ailments; hopefully, the downstream results of our research can provide evolutionary and health clues as to not only why some groups get more sick than others, but what we might be able to do to help these groups in the future, and to be aware of how rapidly shifting cultural and subsistence practices could affect the health of groups like the Baka.

Labwork in the field: Stool samples in white containers awaiting fecal microscopy screening.

Labwork in the field: Stool samples in white containers awaiting fecal microscopy screening.

Written by: Meagan Rubel, MPH, Rubel@sas.upenn.edu

Health Equity- A Dream or an Achievable Goal?

Source: Saskatoon Health Region Advancing Health Equity

Source: Saskatoon Health Region Advancing Health Equity

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”  – Dr. Martin Luther King Jr.

Nearly half a century after Dr. King’s observation, the Affordable Care Act made tremendous strides towards equality of access in health care. Equality promotes fairness, however it’s only effective if everyone starts from the same place and has the same needs.  When it comes to breaking the barriers to health care equity—we still have a long road.

Dr. David Satcher was the keynote speaker for the Perelman School of Medicine Health Equity Symposium, held at the University of Pennsylvania in January. He was the first African American Surgeon General of the United States and is the current director of The Satcher Leadership Institute at the Morehouse School of Medicine. “In order to eliminate disparities we need leaders who care enough, know enough, will do enough, and are persistent enough,” he said. He encouraged attendees to delve deeper into the realities of health inequity in America.  The symposium provided a glimpse into some of these inequities.

According to the CDC Health Disparities & Inequalities 2013 Report, Non-Hispanic Black adults are 50% more likely to die of heart disease or stroke prematurely than Caucasians.  Until recently, scant efforts in organizational quality improvement were made in health care to address racial disparities. This was evident in the health care inequities of our Veterans population.

Said Ibrahim, co-director of the U.S. Department of Veterans Affairs Center of Health Equity Research, posed the following question at the Symposium,

“How do we make sure the equality of opportunity translates to the equality of health outcomes?”

According to the Department of Veteran Affairs Health Service Research & Development Services, minority veterans are receiving less and lower quality health care, despite needing more and higher quality care (suggesting a form of “regressive” healthcare delivery).

Another population that is currently experiencing health care inequities are Asian Americans. They are currently the fastest growing minority group with a growth rate increase of 46% from 2000 to 2010.  Ironically, this group receives little attention in the statistical analyses of health and health care inequities. The labeling of the “model minority” for Asian Americans is quite paradoxical —simultaneously successful and marginal. The notion has often led to the tuning out of the hardships of prejudices, health disparities, and health care inequities, Asian Americans face.

pic 2

Although the Affordable Care Act benefited Asian Americans in increasing health care access, cultural competence and community engagement is necessary to successfully eliminate the gaps in health care equity.   A concerted effort by public health professionals on local, state, and national levels will help bridge the gap in health care access in the Asian American & Pacific Islander communities.

The LGBT community  faces health care inequity as well. Risk of psychiatric disorders, substance abuse, and suicide are elevated as a result of social stigma and discrimination, calling for a need for culturally competent medical care.

SOURCE: Center for American Progress, 2009

SOURCE: Center for American Progress, 2009

Increasing coverage promotes greater access to care but it won’t translate to equity of health outcomes. Quality improvements in health care delivery must place emphasis on social determinants of health and culturally competent care.  Our health care approach should not be one size fits all, but rather it must be modified to fit the specific needs of vulnerable populations.

Written by: Amy Rajan, RN, MSN/MPH Candidate, Class of 2016

Fellow Feature: Autism Spectrum Disorders – A Look into the Changing Prevalence Over Time with Susan E. Levy, MD, MPH

CPHI Senior Fellow discusses her research on autism spectrum disorders (ASD) and discusses the changing prevalence of ASD and its’ public health implications.

Susan E. Levy, MD, MPH Associate Professor of Pediatrics, Perelman School of Medicine

Susan E. Levy, MD, MPH
Associate Professor of Pediatrics, Perelman School of Medicine

Susan E. Levy is a pediatrician specializing in neurodevelopmental disabilities.  Her clinical and research interests center on the care of children with autism spectrum disorder (ASD).  Her research focuses on early identification, diagnosis, surveillance and treatment of children with ASD.  In particular, Dr. Levy focuses on the use of complementary and alternative medical treatments (CAM).

Dr. Levy is the founder and director of the Regional Autism Center (RAC) at Children’s Hospital of Philadelphia and serves as the co-principal investigator of PA-CADDRE (Pennsylvania Center for Autism and Developmental Disabilities Research and Epidemiology).  PA-CADDRE is a Center for Disease Control and Prevention-funded research program of The University of Pennsylvania School of Nursing and Children’s Hospital.  The goals of this program include ASD surveillance to determine prevalence, screening and early identification of ASD, and research on the etiology of ASD.

Autism Spectrum Disorders – A Look into the Changing Prevalence over Time

Q: What do we know about Autism Spectrum Disorder (ASD)  

Autism spectrum disorder (ASD) is characterized by a number of factors including:

  • Persistent deficits in social communication and social interaction across multiple contexts;
  • Restricted, repetitive patterns of behavior, interests, or activities;
  • Symptoms must be present in the early developmental period (but may not be recognized until later); and cause clinically significant impairment in social, occupational, or other important areas of functioning.

The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have.

Q: How has our understanding of Autism changed over time?

Autism today is quite different compared to 15 years ago when I first became involved in the research.  This is in large part due to changing criteria with different versions of the DSM diagnostic manual, which paralleled some of the changes in the reported prevalence. The biggest change happened in 2013 when the criteria changed to combine social characteristics and communication into one category – which really makes sense because communication that is not for social purposes is not as meaningful. The changes in criteria over the years have made a difference in terms of how we look at the field – the criteria went from being very narrow to much broader.

Q: What would you tell parents who are concerned about the link between Autism and Vaccinations?

I feel that the evidence is firm that vaccinations, particularly the MMR, are not related as a cause of autism. I think that families deciding without full information to withhold vaccination are putting other children and individuals at very high risk.

Q: Where do you see the field of ASD going?  

Moving forward, hopefully we will look at the autism spectrum disorder as a category of disability with a better appreciation for the range in severity of symptoms and core difficulties, and the impact of co-occurring symptoms or disorders which have a large impact on quality of life. That’s an area in the clinic that we’re much more tuned into now because of some of the work we’ve done with our Autism Speaks grant, looking at the impact of   co-occurring conditions such as sleep disorders.

The other important area is the move over the last ten years to earlier identification, and with promising tools and strategies to identify kids at high risk for the diagnosis – such as kids with genetic disorders, premature infants, and siblings of kids with autism.  There’s a really a big push towards early identification.

Q: What research are you currently working on?

My largest project is with Jennifer Pinto-Martin on a CDC funded large multi-site case-control study of risk factors for ASD in children ages 2.5-5 with autism. It’s a case-control study with 3 groups: one group of kids who have ASD, one group of kids who have developmental delay (not autism), and the 3rd group is a population control. It’s a phenomenal study with a very large sample size in all groups. We are just starting to delve into the data, looking at the phenotypes and risk factors.

The other research program I am involved in is through Autism Speaks Autism Treatment Network (AS-ATN). Autism Speaks has funded 17 autism treatment networks across the country and in Canada and is committed to investigating and improving medical care for kids with ASD, as well as identifying difficulties.  We have enrolled families into the database, and have started to study and look at issues about treatment.

Q: How does your research translate into practice?

I’ve recently taken a course from CHOP’s Office of Clinical Quality Improvement and am a champion for my division in terms of looking at quality improvement and improving patient safety. So a big focus of my activities has been developing pathways and strategies for different providers or experts to evaluate children with ASD and other neurodevelopmental disorders and identify comorbid behaviors that could complicate treatment and progress. Thus, what we’ve learned from the CDC study in terms of risk factors and causes and profiles is going to help us in terms of management.

Career Path – From Clinician to Researcher and Public Health Advocate

Q: How did you get started in the field of development disabilities?

I became interested in developmental disabilities during my residency at St. Christopher’s Hospital for Children. As a 2nd and 3rd year resident, I realized I was very interested in taking care of kids with special healthcare needs and chronic neurological and developmental disorders.  My first year of fellowship focused on developmental disorders, and then I received more training at Kennedy-Krieger Institute at Hopkins. I came to CHOP and Penn in the early 80s to work in our general developmental disability evaluation unit.  Shortly after, I became interested in ADHD and along with a child psychiatrist (Dr. Tony Rostain); we founded the CHOP ADHD evaluation and treatment program.

Q: What provoked your work with ASD?

I became interested in ASD In the early 90s and received additional training. At that time I also started working with Jennifer Pinto-Martin. In the summer of 2001, we submitted a grant to the CDC and we were chosen as one of the centers to be a surveillance site and to develop a multi-site case-control study. For me, in a sense, the rest was history.

Q: Why did you decide to receive a Master of Public Health?

In the mid-2000s, I started thinking, ‘I’m doing public health research; I really need to get more training.’ In 2009 I started the MPH program, and then graduated in May 2013. The MPH has given me a great perspective in terms of appreciating the challenges and issues of kids with autism and special healthcare needs. As a clinician, my training in public health also helps me talk to people when they are concerned that ASD is an “epidemic – that there is not an increased risk of having it due to exposure as we would classically talk about an epidemic.”  Rather, we know that the increased numbers are related to the broadening criteria over time, heightened awareness about the diagnosis, and earlier diagnosis. So I started off as ‘just a clinician,’ and morphed into this researcher and public health advocate.

Q: How do you consider yourself a Public health Advocate? 

I’ve been active in the American Academy of Pediatrics, particularly the Council on Children with Disabilities.  I’ve been a contributor to the clinical reports in terms of diagnosis and treatment of kids with autism spectrum disorders; I was a co-author of the autism toolkit to help pediatricians, and using what I learned from my capstone on shared decision making, I’m going to co-author a clinical report for the American Academy on shared decision making for children with developmental disorders, bringing it full circle.