Section 7: Community-Engaged Research Project Spotlights

Over the past decade, the rate of major depressive disorder, or MDD, among teens in the U.S. increased by more than 50 percent. MDD increases the risk for suicide, the second leading cause of death among teens. Many treatment options exist for MDD, but few teens are screened for MDD during health care visits. Screening rates are even lower among those who belong to racial or ethnic minority groups. More teens may get screened for MDD, and receive diagnosis and treatment, if screening takes place in schools.

A team of researchers at Penn State compared the effectiveness of two methods for screening teens for MDD in schools:

• Universal screening, where all students get screened
• Targeted screening, where students with concerning behavior get screened

The research team wants to learn whether universal screening increases the number of teens who are found to have MDD and get care for it. They also want to see whether it reduces differences in how often students get care for MDD across race and ethnicity.

Who can this research help?

School systems and policy makers may be able to use these findings when considering how to identify MDD and improve access to treatment for MDD among teens.

What is the research team doing?

The research team is working with Pennsylvania public high schools that serve mostly minority, urban, or low-income students. The team is enrolling at least 9,650 students in the study. The team is assigning students by grade level within each high school to receive either universal or targeted MDD screenings by chance. Students assigned to universal screening complete a mental health questionnaire at the start of the school year. Students who screen positive for MDD meet with their school’s Student Assistance Program, or SAP. The SAPs conduct further assessments and, if needed, recommend follow-up services or treatment. Students assigned to targeted screening follow the schools’ standard process for identifying MDD. Students with concerning behavior are referred to the SAP. The research team is tracking the percentage of students who screen positive for MDD, get recommendations for follow-up services or treatment from the SAP, and take part in at least one recommended service or treatment for MDD. They are also tracking signs of success in school such as grade point average, standardized test scores, and graduation rates. The team is comparing the effectiveness of each type of screening by race, ethnicity, and sex. Check out their publication here!

Stakeholders engaged in the research include school staff, parents, students, Student Assistance Program (SAP) regional coordinators and suicide-prevention organizations, all of whom have provided guidance and feedback throughout the study, from input on study design through dissemination of results.

“Working with stakeholders in the SHIELD study was both humbling and eye opening. I gained a deeper understanding of what a small segment of adolescents I get to see in primary care. This both highlighted the value of SHIELD and the impressive commitment of the schools who agreed to partner with us in supporting student mental health.”
– Deepa Sekhar, MD, MSc, Principal Investigator

“Participating in the SHIELD stakeholder group was an incredible and rewarding experience. Not only did I enjoy connecting with other passionate, dedicated mental health advocates from across the state, but I was also continuously exposed to new ideas and perspectives from the other stakeholders, which helped to enrich my organization’s work. The Penn State PRO Wellness team’s true commitment to seeking feedback and authentically listening to stakeholder ideas and views was evident in every facet of the study, and they provided many outlets for meaningful involvement in the mental health awareness and education programs that accompanied the study.”
– Francesca Pileggi, Executive Director, Aevidum

Researchers at Penn State were interested in providing accessible and helpful resources for older adults living in lower income housing. They also wanted to gather information from this underrepresented group regarding their opinions and feelings about their living environment, health and well-being. To do this, the researchers set up a two-day event in State College, Pa., and a four-day event in Wilmington, N.C. The events were held at low-income housing developments for older residents. Representatives from Penn State and local organizations offered older residents helpful information and services (e.g., health screenings, cooking classes with budget friendly ingredients, tips for safely searching the internet). The event was also a time to talk with residents about current research projects being held in the older adult community, such as the Tailoring Environments for Active Life Engagement (TEALE) study. During these events, several older adults joined the TEALE study. The TEALE study was able to share findings about older adults’ interests in leisure activities and the constraints that limit their involvement in leisure activities. The findings of this research were useful because there was minimal research on the topic from previous studies. Furthermore, the study team felt the outcomes of this project were helpful in showing the barriers faced by this community. This information can help efforts to determine better community programs and services to minimize or eliminate these identified constraints. Check out their publication here!

“It is pertinent to find various opportunities to stay connected and engaged with community residents and/or leaders, as these individuals can provide insightful perspectives that can enhance your professional and lived experiences.”
– Alyssa A. Gamaldo, PhD, Former Co-Lead, Community-Engaged Research Core, Penn State Clinical and Translational Science Institute (CTSI)

Nursing home residents with COVID-19 have been the largest population coming to hospitals, requiring ventilators and dying from the virus. There are many challenges to controlling infections in nursing homes, particularly since 97 percent of nursing home infection control staff are not trained on how to prevent the spread of infections. The Centers for Medicare & Medicaid Services (CMS) and Centers for Disease Control and Prevention (CDC) provide nursing homes with written guidance for infection control and prevention of COVID-19. Researchers at Penn State received funding from the Patient-Centered Outcomes Research Institute (PCORI) to implement Project ECHO, a research-supported videoconferencing platform, to connect Penn State experts with nursing home staff and administrators to help put these guidelines into practice. Project ECHO uses case-based, collaborative learning to support discussion of learners’ challenges and barriers. The study randomly assigned (like flipping a coin) 136 nursing homes into one of two study groups: a 25-week COVID-19 Project ECHO intervention with an emphasis on COVID-19, quality improvement and infection control with and without an eight-week refresher course (ECHO plus) to determine which was more effective in reducing the number of nursing home residents with COVID-19. Check out the study protocol publication here!

The study team assembled a Stakeholder Advisory Board comprised of: nursing home residents and their families, nursing home staff and administration, resident councils, state agencies and policy makers, payers and state professional organizations. Stakeholders are engaged in all aspects of the research through bimonthly advisory board meetings.

“Research that meaningfully impacts communities suffering from health disparities starts with a network of people invested in bringing about change. We are grateful for the collaboration of these important community leaders and hope our work will reduce poor outcomes from COVID-19 in our most vulnerable populations, including nursing home residents.”
– Jennifer L. Kraschnewski, MD, MPH, Principal Investigator

“The ability to collaborate with other key stakeholders across the health care continuum and provide insight from the long-term care industry perspective was one of the most important aspects of participation in the PCORI nursing home research study. The work provides opportunities to support and improve staff competencies and resident care that providers have been dedicated to day in and day out.”
– Chris Fisher, MS, NHA Vice President, Operations, Pennsylvania Health Care Association, www.phca.org/www.findpacare.org

At the Pennsylvania Health Care Association (PHCA), we are proud of our reputation as the commonwealth’s leading advocacy association, representing Pennsylvania’s most vulnerable residents and their providers of care.

With offices in Harrisburg, just steps from our state Capitol, we advocate each and every day on behalf of our more than 400 member facilities in the pursuit of a robust, high-quality, resident-centered continuum of long-term care.

Influence is earned not borrowed. From policy and regulatory affairs to Medicaid and Medicare funding, to communications and changing the narrative surrounding our sector, PHCA staff has the expertise, experience and connections to advocate for and support our membership.

PHCA provides expert resources and information to help you make the best decisions to improve and maintain quality care and quality of life. Whether it’s education, communication, or grassroots advocacy, PHCA is truly at the forefront of every long-term care issue in Pennsylvania.

Prior research shows that people who cannot meet their basic needs are more likely to respond to their social and financial hardships with behaviors that lead to “diseases of despair,” which include suicide, drug overdose, and alcohol-induced liver diseases. The Penn State Implementation Science Collaborative (ISC) team partnered with the 211 Southwest Helpline (PA211SW) and the Pennsylvania Department of Drug and Alcohol Programs (PA DDAP) to identify people at greater risk for diseases of despair-related behaviors. The project’s goal was to show the usefulness of existing community and social service systems, like the PA211SW, to actively screen and link at-risk individuals to needed health referrals in the communities they live. Results show that the six-item screener was generally accepted by callers, and almost half of surveyed participants worked with the referral provided. Data also suggests that callers think very highly of resource navigators and trust their health recommendation. Learn more about this research here [PDF]!

This study wouldn’t have been possible without the engagement of PA211SW patient navigators and the leadership team, who partnered in the following study activities:

• Participated in research ethics training and helped with the recruitment and participation of resource navigators in the project.
• Provided feedback on basic versions of the risk assessment screener and study protocol.
• Used the risk assessment screener as part of the 211 workflow and made sure resource navigators were asking the screener to callers.
• Connected researchers with IT staff to access data from their system.
• Provided consistent communication and feedback throughout project.

“Our pilot project showed how we can come together as equal partners – the academia, government, and social service organizations like the PA211SW – and implement solutions for those most in need. There is a range of health and social services available for diseases of despair behaviors but many people don’t know that they exist or if they qualify for services, showing how critical it is to provide that crucial link to needed health referrals. The Penn State Clinical and Translational Science Institute (CTSI) not only gave us the funding needed for the pilot activities but also the opportunity to innovate and build partnerships with community and state partners. I encourage our faculty to take advantage of the CTSI Bridges to Translation funds to engage in community-engaged research.”
– William Calo, PhD, JD, MPH, Principal Investigator

“211 is proud to be a partner in projects such as this. We know that each piece of information that is collected can result in a positive impact on the communities that we serve and help those that are struggling.”
– Cinda Watkins, CCCM, 211 Southwest Senior Director, United Way of Southwestern Pennsylvania

The United Way 211 Helpline is a 24/7/365 service to assist and connect those struggling in the community with valuable resources. Whether it be a family having difficulty paying the rent or a single mother struggling to put food on the table, 211 can get individuals connected with agencies that can help. They are available 24/7/365 by phone, text or chat. When someone calls the service, staff are able to do additional screenings as well that can help provide valuable information to community partners and researchers.

In the last decade, there has been an unusual drop in life expectancy in the U.S. A major reason for this change has been a rise in Deaths of Despair, i.e., death from suicide, drug abuse, and alcoholism. These deaths were first seen as increasing in rural white working-class people in midlife with low education levels and linked with long-term economic decline. However, we are now seeing that they are rising among working-class people of all races, ethnicities and locations.  Most studies have been epidemiologic in nature–in other words looking at the scope of the problem at the population level. Less work has been done to talk with residents of rural and urban settings with high rates of diseases of despair to learn their views. In 2019-2020, Penn State researchers drew upon their partnership with a major insurance company (Highmark) and launched a project to look into perceptions about despair-related illness and potential intervention methods among diverse community members living in separate rural and urban hotspots. The research team spoke to 60 people living in three distinct rural and urban areas in central Pa. that their data showed as having high rates of despair-related illness. All study participants were community members or community health workers involved in health system outreach who were known to work with individuals at risk for suicide, alcoholism or drug use. These participants described common factors driving despair-related disease, including financial distress, lack of support or social services, decreasing sense of community and families breaking apart. Intervention strategies included building strength through community-level coordination and state investments in social services and infrastructure. Check out their publication here!

“Deaths of despair have been an extremely troubling trend in the U.S., and central Pa. – like many areas affected by de-industrialization and loss of jobs – has seen an unfortunate rise in suicide, alcoholism and overdose. In order to address the root causes of this crisis, we have drawn upon our community connections to understand what has been happening at the local level the past few decades as despair-related illnesses have risen. Being able to sit down with our neighbors, who are intimately connected to their communities and highly motivated to reduce human suffering, has been both illuminating and heartening. It has helped us gain a greater sense of what is driving despair in peoples’ lives and where we might look for solutions.”
– Daniel George, MSc, PhD, Principal Investigator

Patients with ongoing and serious chronic kidney disease often need dialysis or a kidney transplant. While coping with symptoms of kidney disease, these patients will need to make changes to lifestyle; to work through the health care system; and to make the treatment decisions best for their lives. The disease and the problems involved in the treatment choices present challenges that often lead to negative impact on quality of life. At the same time, caregivers of patients with serious kidney disease, often, encounter a lot of caregiver burden. It is known that involving patients in their own care improves quality of life and other outcomes. Since 2004, the Kidney Foundation of Central Pennsylvania (KFCP) has run a peer mentoring program (Patient and Family Partner Program: PFPP) to work with and empower patients with kidney disease and their caregivers in the care process. The PFPP was created by a kidney transplant recipient, who was a registered nurse and a member of the KFCP Board of Directors. Through an approved training program, the PFPP trains patients with kidney diseases who have adjusted to their kidney disease, and their caregivers, to become peer mentors to patients who have recently been diagnosed with kidney disease. In 2006, Nasrollah Ghahramani, MD, MS, volunteered to serve as one of the instructors for the peer mentoring program, and later on to oversee the program from a medical point of view. From the onset of his becoming familiar with the PFPP, and having witnessed the positive impact on patients and families, Dr. Ghahramani was looking for opportunities to widely highlight the program. In 2014, his research team at Penn State partnered with patients, caregivers and the leadership of the PFPP and the KFCP to apply for funding from the Patient Centered Outcomes Research Institute (PCORI) to study the effect of PFPP on patient and caregiver quality of life. They found that patients and caregivers who participated in the peer mentoring program (face-to-face or online) had significant improvements in quality of life and caregiver burden, respectively. Check out the study publication here!

“In 2006, when I volunteered to serve as an instructor in the PFPP, I never anticipated the incredibly positive effect of the partnership on my career. The relationship with the core group of community partners that provided insight and support for the original research study, has resulted in a highly valuable resource for several other research ideas.”
– Nasrollah Ghahramani, MD, MS, Principal Investigator

The Kidney Foundation of Central Pa (KFCP) was founded in 1979 by local visionary, Alyce Spector of Harrisburg, Pa. Research to determine the services most needed by the community in these early years formed the basis of the services provided today. In 1992, Peggy Pierce became Executive Director. As a kidney transplant recipient, she understood the needs of patients and was instrumental in founding the Patient Family Partnership Program (PFPP). This mission of this program is to provide appropriate emotional and practical support for chronic kidney disease patients. The PFPP also trains mentors to support patients and caregivers living with kidney disease who can relate to their experience. The KFCP continues to be a community leader supporting families living with chronic kidney disease through its continued commitment to education, advocacy, and support.

“The Kidney Foundation of Central Pa (KFCP) recognizes and appreciates its partnership with Penn State College of Medicine, Department of Nephrology under the leadership of Dr. Nasrollah Ghahramani, Chief of the Division. It is because of his expertise and commitment to quality care and optimal outcomes for patients living with CKD that the KFCP has been able to document the importance of peer connections in supporting patients and families as they manage dialysis or navigate a stage of the kidney transplant process. People like Dr. Ghahramani are the unsung heroes making a difference in the lives of every people, every day!”
– Phyllis Hicks RN BSN CLSSGB, Executive Director, Kidney Foundation of Central PA

Trauma-informed care is a type of care that focuses on the limited understanding of and lack of response to the effects of trauma. In 2016, researchers at Penn State Behrend began a large research  trial to spread and evaluate the use of trauma-informed care in public health care organizations. Over the span of two years, many trainings were provided across seven community organizations to 588 employees. Early results from this project were used to support a $200,000 Shaping Tomorrow grant (funded in September 2018) through the Erie Community Foundation (ECF) to expand the Susan Hirt Hagen Center for Community Outreach, Research and Evaluation (CORE) at Penn State Behrend to be the first training center in the region for trauma-informed care.  By collecting and analyzing data from the training center, it became clear that — providing trauma-informed care for individuals with trauma exposure improves mental health outcomes. Organizations not using evidence-based practices (EBTs) for treating trauma are at a disadvantage for improving overall community health and wellness.

During this project, it was observed that there was not close to enough trauma-focused, evidence-based treatments for adults in Erie County. Because of this, Penn State researchers obtained a $25,800 Helping Today award from the ECF to bring training in Cognitive Processing Therapy (CPT) to 40 providers from seven organizations in the region. This project provided important data on CPT use across several trauma-exposed communities. The community-engaged research project has continued while partnering with the Sarah A. Reed Children’s Center (SARCC), a psychiatric residential treatment facility for youth. To learn more about this community-engaged research project, click here for the full article or here for the project blog!

“Community-engaged research is the cornerstone of scientific inquiry in real-world settings.”
– Wilson Brown, PhD, Principal Investigator

Sarah A. Reed Children’s Center is celebrating 150 years of service as one of Erie’s leading providers of mental health services. Our mission is to enhance the well-being of children, adults and families, helping them realize their potential and experience success. Our highly trained team of psychiatrists, psychologists, nurses, teachers and behavioral staff provide clinical services to 1,700 children, adults and families annually, many of whom also have histories of complex trauma. We specialize in trauma-informed care and are certified in the highly effective Sanctuary® Model, a nationally recognized practice that helps individuals recover from the devastating effects of interpersonal trauma. We partner with all Erie County school districts to provide behavioral health services to students and also provide a Doctoral Internship Program and a Child Psychiatry Fellowship Program to train future leaders. We are fully licensed by the PA Department of Public Welfare and accredited by the Joint Commission for Accreditation on Healthcare Organizations and the American Psychological Association.

Dr. Wilson Brown with doctoral interns.

“The collaboration with Dr. Wilson Brown serves as a critical resource, supporting our organization’s approach toward sustainable practices, which foster a trauma-informed system of care. The Children’s Center is grateful for the ongoing partnership and the transfer of scientific knowledge about trauma that readily informs treatment and makes our programs stronger.”
– Dr. Adrienne Dixon, President/CEO of Sarah A. Reed Children’s Center

“Sarah A. Reed Children’s Center is very fortunate to have Dr. Wilson Brown as a faculty for our doctoral internship program. He has taught the program’s Child Trauma Seminar for over five years and been a vital resource and mentor to our doctoral interns, who travel to Sarah Reed from across the country to participate in this APA-accredited program. Dr. Brown has led our interns in community-engaged, trauma-informed research projects that provide incredible educational opportunities for our students, as well as yielding important results that positively impact the well-being of children and families in our community and across the nation. We are excited for the future research and learning that unfold each year, and most importantly the lives that continue to be transformed thanks to our ongoing partnership with Dr. Brown and Penn State.”
– Dr. Linda Fleming, Associate VP of Psychology Internship Training and Quality Assurance