Category Archives: CPHI fellows

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

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.

Social Policy Researcher at Penn Honored With WOAR’s Bridge of Courage Award

CPHI Fellow and University of Pennsylvania School of Social Policy & Practice Professor, Susan B. Sorenson, will receive the 2014 Bridge of Courage Award from Women Organized Against Rape.  The Bridge of Courage Award recognizes exemplary leadership and commitment to promoting awareness, education, advocacy, and policy research to end sexual violence.

Congratulations, Susan!!

Sorenson 570x370_0

Full article: http://www.upenn.edu/pennnews/news/social-policy-researcher-penn-honored-woar-s-bridge-courage-award

Pressure at Penn

On this graduation day, we’re reflecting on all of the hard work and accomplishments of our students. Which makes us wonder about the following question: what comes to mind when you think about “pressure” at the University of Pennsylvania?

Picture1This is one of the topics students in Rosemary Frasso’s qualitative research course set out to explore this semester. An exhibit summarizing their work is currently on display at UPenn’s Weigel Information Commons.

The students used a variety of methods to arrive at their results. In a great write-up of the exhibit at the PennWIC blog, WIC’s Anu Vedatham explains the process:

When I visited Rosie’s class, SW781 Qualitative Research, the students described how they used different qualitative techniques during each step of the process.

First they came to consensus on a topic they wanted to explore using a Nominal Group Technique, and how they began to explore the meaning of pressure among 75 graduate students across campus using Free-Listing. Then, employing snowball sampling they conducted a series of Photo Elicitation Interviews to gain a better understanding of how graduate students experience pressure.

The study protocol used by the class was developed by Carolyn Cannuscio. Below is a visualization of the freelist data collected by the students:

pressure

Penn Group Calls for Tobacco Divestment

In an open letter to the Penn’s Trustees, a group of Senior Standing Faculty are calling for the university to cease investing in tobacco company stocks. Such investments are “clearly antithetical to the university’s research, teaching and health care missions,” say the 532 faculty members who have signed the statement.

The ad hoc committee working on the issue has also published a report giving context for the push:

The University of Pennsylvania — a recognized leader in global outreach initiatives through its
internationally eminent university and academic medical center — is committed to making a positive contribution to people’s lives around the world. Yet we have fallen out of step with our Ivy League and medical school peers on the issue of tobacco. Of the five Ivies that have deliberated about tobacco investment, only Yale has not adopted a tobacco restriction for their endowment. Of the top five medical schools, Penn is the only one without a tobacco restriction. We believe this is inconsistent with the values of the Penn community as embodied in the Penn Compact and in our leadership, education, research, and service missions around the globe.

You can add your name to the letter here and keep up to date with the effort on the group’s Facebook page.

CPHI is committed to improving the health of populations and fully supports a policy of tobacco divestment for Penn. Read more about our statement on tobacco use and a smoke-free Penn campus here.

antithetical to the university’s research, teaching and health care missions – See more at: http://www.upenn.edu/almanac/volumes/v60/n28/spout.html#sthash.hhL6sTgx.dpuf
antithetical to the university’s research, teaching and health care missions. – See more at: http://www.upenn.edu/almanac/volumes/v60/n28/spout.html#sthash.hhL6sTgx.dpuf
antithetical to the university’s research, teaching and health care missions. – See more at: http://www.upenn.edu/almanac/volumes/v60/n28/spout.html#sthash.hhL6sTgx.dpuf

Karin Rhodes Team Receives Joint Grant

Karin RhodesReposted from LDI.

A proposal by Karin Rhodes and colleagues has been selected as the first to be funded by the interdisciplinary research program of Penn’s Center for Clinical Epidemiology and Biostatistics (CCEB), Leonard Davis Institute of Health Economics (LDI) and Center for Public Health Initiatives (CPHI).

Launched in January, the program, officially called the joint CCEB/LDI/CPHI program for Seeding Innovative New Directions in Collaborative, Interdisciplinary Research on the Health of Populations, operates like an in-house “incubator” designed to foster cross-disciplinary projects throughout Penn’s health policy research community.

Seminar grant
The cross-center initiative’s first call for proposals offered a grant for a team of investigators to organize a seminar to examine an important health problem and identify the most fertile areas for further study.

The proposal selected for funding is a “Symposium to stimulate the development, implementation, and empirical testing of innovative transitions of care models” submitted by a team headed by Rhodes.

Rhodes, MD, is an Associate Professor of Emergency Medicine at Penn’s Perelman School of Medicine and Director of the Division of Health Policy Research at the School of Social Policy & Practice.

Fellow Spotlight: Dr. Baligh Yehia

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– Daniel Calder, MPH; Baligh R. Yehia, MD, MPP, MSHP; and Neil Fishman, MD staff the new Penn Medicine Program for LGBT Health

Today CPHI is featuring the work of Dr. Baligh Yehia, an Infectious Disease physician and CPHI Senior Fellow.

Dr. Yehia recently launched the Penn Medicine Program for LGBT Health. The program has several aims:

  • to nurture a LGBT-inclusive climate and culture at Penn
  • to advance LGBT health education and research
  • to improve LGBT patient care
  • to engage community organizations in the promotion of LGBT health

This interprofessional program is unlike any other LGBT health program in the country, engaging the Perelman School of Medicine, School of Nursing, School of Dental Medicine, Center for Public Health Initiatives, and affiliated health systems.

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The new program was created to help clinicians be sensitive to the needs of LGBT people.

Why focus on LGBT health specifically? LGBT individuals experience multiple health disparities due to harassment, discrimination, and stigma. These individuals have higher rates of tobacco, alcohol and drug use, depression, suicide, certain cancers, and HIV/STI’s compared to their heterosexual counterparts. In addition, the LGBT community faces many barriers to high quality patient-centered care, including decreased access to healthcare, lack of awareness and insensitivity to their unique health needs, and inequitable health system policies and practices.

How can we help? The Penn Medicine Program for LGBT Health is partnering with CPHI and the Leonard Davis Institute to address the health disparities and barriers to care within the LGBT community. On Tuesday April 1st, from 4:00 to 6:00pm, the program will host an educational event in the John Morgan Reunion Auditorium.  The event, entitled “Let’s Talk About Lesbian, Gay, Bisexual, and Transgender (LGBT) Health: Realizing the unique health needs of the LGBT Community” will feature national and local leaders in LGBT health who will address the Affordable Care Act’s impact on LGBT community, LGBT research and education, and LGBT health and patient care in Philadelphia.

For more information: