HEAL Connections Sharing Session Two-Part Series: Inclusive Language, Imagery, and Storytelling for Addiction and Pain Researcher Teams—Focus on Pain

Janelle Letzen, Ph.D., Health Science Policy Analyst, National Institute of Neurological Disorders and Stroke

Dr. Janelle Letzen is a Health Science Policy Analyst in the Office of Pain Policy and Planning at the National Institute of Neurological Disorders and Stroke (NINDS). She completed her doctoral degree in Clinical Psychology at the University of Florida and her postdoctoral training in biobehavioral pain mechanisms at Johns Hopkins University (JHU). Prior to joining NINDS, Janelle held a faculty position for two years in the Department of Psychiatry & Behavioral Sciences at JHU where she conducted research on biopsychosocial mechanisms of chronic pain treatment responses, particularly among marginalized groups.

Kerri Cavanaugh, M.D., Associate Professor of Medicine, Vanderbilt University Medical Center

Kerri Cavanaugh, M.D., is an Associate Professor of Medicine in the Division of Nephrology and Hypertension within the Department of Medicine at Vanderbilt University Medical Center (VUMC). In her efforts to support patient-centered initiatives and engage faculty from across VUMC, Dr. Cavanaugh also serves as the director of the Center for Effective Health Communication. Dr. Cavanaugh’s research focuses on identifying ways to improve doctors’ and other health providers’ communication with patients and their families. Her key contributions have determined the influence of health literacy, establishing it as a cornerstone of any successful patient engagement program, and novel surveys measuring patient knowledge, self-efficacy, and self-care behaviors tailored to people living with kidney disease. Dr. Cavanaugh received her M.D. from Yale University in 1999 and M.A. in Health Science and Clinical Epidemiology from Johns Hopkins University in 2006.

Joanna Hobson, Ph.D.Can, University of Alabama at Birmingham

Joanna Hobson is a 5^th year PhD student in the Behavioral Neuroscience training program at the University of Alabama at Birmingham. Ms. Hobson's research uses a social neuroscience framework to help guide understanding of the mechanisms that drive pain disparities. For instance, her recent work has shown that experiences of racial discrimination are associated with greater severity of pain and disability for individuals with chronic low back pain. Relatedly, she has also recently shown that high levels of stigmatization promote depression, poor sleep, and more intense pain in persons living with HIV and chronic pain. Ultimately, the goal of her research is to increase awareness of the influence of social factors on pain physiology and perception. 

Kate Nicholson, J.D., Founder and Executive Director, National Pain Advocacy Center

Kate M. Nicholson, J.D., is founder and executive director of the National Pain Advocacy Center. She is also a civil rights attorney and a nationally recognized expert on the Americans with Disabilities Act (ADA). Nicholson developed intractable pain after a surgical mishap left her severely limited in her ability to sit, stand, or walk for many years. She gave the TEDx talk, What We Lose When We Undertreat Pain, and speaks widely at universities and conferences and to medical groups. She was an appointed member of the Opioid Workgroup of the Centers for Disease Control and Prevention and a 2019-20 Mayday Pain & Society Fellow, and she currently serves on the Global Advocacy Task Force for the International Association for the Study of Pain. Nicholson was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School.

Soumitri Sil, Ph.D., Associate Professor of Pediatrics, Emory University School of Medicine

Soumitri Sil, Ph.D., ABPP, is a Pediatric Psychologist and Director of the Psychology Clinic at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta and Associate Professor of Pediatrics at Emory University School of Medicine. Dr. Sil’s clinical research interest centers on the assessment and treatment of chronic pain in children and adolescents with complex chronic pain conditions, such as sickle cell disease. Her specialization in pediatric pain management focuses on the development and evaluation of behavioral interventions to promote the health and functioning of children and adolescents with chronic sickle cell pain. She utilizes community and participatory engagement strategies to support culturally congruent and relevant interventions for youth with sickle cell disease and their families.  Dr. Sil received her Ph.D. in clinical child psychology at the University of Maryland Baltimore County, her residency and fellowship training at Cincinnati Children’s Hospital Medical Center, and is board-certified in clinical health psychology.

Emily Wakefield, Psy.D., Assistant Professor of Pediatrics, University of Connecticut School of Medicine

Emily Wakefield, Psy.D., is a Pediatric Psychologist in the Division of Pain and Palliative Medicine and Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. She has dedicated her career to understanding and reducing the social and psychological burden of disease for children and adolescents with chronic pain and their families. Dr. Wakefield’s NIH-funded research in pediatric pain-related stigma is inspired by her clinical work with children and adolescents with chronic pain who frequently reported that others did not believe or thought they were making up their pain symptoms. Dr. Wakefield has received several recognitions, including the Director’s Award for Sustained Superior Performance and the Clinical Excellence Leadership Postdoctoral Fellow Award. Dr. Wakefield received her Psy.D. in child psychology from the University of Hartford, completed her residency training at SUNY Upstate Medical University, and received her postdoctoral fellowship training at Connecticut Children’s Medical Center.  

The following resources are recommended further reading from our Inclusive Language, Imagery, and Storytelling for Addiction and Pain Researcher Teams—Focus on Pain panelists.

• Chronic Pain and Stigma Infographic
  • A one-page infographic defining and identifying the effects of stigma as it is experienced by people with chronic pain.
• Stigma Factsheet
  • A two-page infographic from the Pain Management Best Practices Inter-Agency Task Force on the stigma faced by chronic pain patients, patients with comorbidities, and clinicians who treat acute and chronic pain.
• Stigma and Discrimination Research Toolkit
  • A collection of evidence and resources related to stigma and discrimination research. This toolkit may be helpful for researchers, government officials looking to incorporate research into policy, community agencies, and various other stakeholders across disciplines and sectors.
• Stigma in Pain Management and Opioid Use Disorder
  • An overview of the HEAL Initiative’s “Stigma in Pain Management and Opioid Use Disorder” research program, including the research need, program details, and examples of stigma research.
• Pain-Related Stigma and Its Associations With Clinical and Experimental Pain Severity in Youth With Chronic Musculoskeletal Pain Conditions
  • This article by Burel Goodin and his team was recently published in the Journal of Pediatric Psychology. It compares ratings of clinical pain, experimental pain, and pain-related stigma among three groups of youth with rheumatic conditions, exploring the relationships between ratings of pain-related stigma and pain variables.
• Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings
  • This article by Emily Wakefield and her team was published in Pain Reports in 2018. It examines pain-related stigma through a literature review and focus groups, proposing a pain-related stigma model and framework based on their findings.
• Commentary: Chronic pain is like... The clinical use of analogy and metaphor in the treatment of chronic pain in children
  • This paper reviews and catalogs some of the analogies and metaphors that can be used to describe chronic pain and its treatment to children and their families. This can help patients to understand the complexity of chronic pain in an accessible way that may reduce resistance and help them rethink preconceived notions of pain.
• Patient and Community Engagement
  • This page on the HEAL website contains information and tools aimed at helping HEAL researchers incorporate patient and community engagement into their work.
• Nazaire Web Portfolio 
  • A webpage with the collected works of Hertz Nazaire, a Haitian artist whose work reflected the experience of living with and brought awareness to Sickle Cell Disease. The page includes links to videos featuring the artist, his social media posts, and images of his art.