As part of my advocacy work, I have led several major projects for various organizations and authored multiple research papers in many esteemed journals, as described below:
1. Patients’ Journey through Inflammatory Bowel Disease (IBD): A Qualitative Study is a research study primarily authored by Tina Aswani Omprakash with support from physicians and Genentech on categorizing patient journeys to determine unmet needs in a very diverse IBD community throughout the United States. The poster was presented at the prestigious conference, Crohn’s & Colitis Congress, in January 2021 by Tina. Please refer to the study in the journal Inflammatory Bowel Diseases here. And feel free to download the poster here.
2. Circle of Care: A Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease is a new resource designed to help caregivers navigate their journey caring for a child or adolescent with Crohn’s disease. The centralized guidebook authored primarily by Tina Aswani Omprakash offers effective information and tools that have helped other caregivers in similar situations. A 2019 study from the National Alliance for Caregiving—which reported survey feedback from 728 individuals who reported providing unpaid care for someone with IBD—found that IBD has a profound impact on the lives of caregivers and highlighted their unmet needs. Findings from that study inspired the development of this guidebook. If you or someone you know cares for a child or adolescent living with Crohn’s disease, make sure to check out the guidebook: Download the Guidebook
3. Several new sections on IBD and colorectal surgery options have been published on the United Ostomy Associations of America (UOAA) website authored by Tina Aswani Omprakash and medically reviewed by Jordan Axelrad, MD, MPH. These webpages contain detailed medical illustrations and descriptions for IBD patients and their families to carefully review to understand surgical treatment options better. The webpages are located under the “Ostomy Information” dropdown menu on the UOAA’s homepage. They are categorized under “Crohn’s Disease & Ulcerative Colitis Information” as the following sections:
- Defining, Caring & Treating Crohn’s Disease & Ulcerative Colitis
- Preparing for Ostomy Surgery
- Common Peristomal Issues, Managing Diet & Mental Health
- Intimacy, Fertility & Pregnancy with a Stoma
- Additional Resources for Ostomates with IBD
4. Addressing unmet needs from a new frontier of IBD: the South Asian IBD Alliance highlights the unique challenges and disparities in IBD care faced by the South Asian IBD community. The article introduces the South Asian IBD Alliance, the first international patient-clinician collaborative initiative in the IBD space and lays out the alliance’s key aims. Through its focus on patient outreach and advocacy, professional development for multidisciplinary IBD clinicians, research centered on pathogenesis of IBD, South Asian phenotypic distinctions and collaborative partnerships, SAIA hopes to address unmet needs and improve care for South Asian IBD patients.
This article was published in The Lancet Gastroenterology and Hepatology. The full article can be accessed here: 10.1016/S2468-1253(21)00336-8
5. Underrepresentation of Minorities and Underreporting of Race and Ethnicity in Crohn’s Disease Clinical Trials is a research study outlining a potential underrepresentation of minorities in CD drug development as well as a lack of reporting of race in the majority of studies. Given racial genetic differences it cannot be assumed that efficacy and safety results observed for White populations can be extrapolated to other races. Collaborative initiatives are needed to increase diversity within CD trials, using frameworks such as the strategies to increasing diversifying in clinical trials outlined by the FDA. This article was published in Gastroenterology. The full article can be accessed here: https://doi.org/10.1053/j.gastro.2021.09.054.
6. Underrepresentation of Minorities and Lack of Race Reporting in Ulcerative Colitis Drug Development Clinical Trials is a research study outlining a potential underrepresentation of minorities in UC drug development as well as a lack of reporting of race in the majority of studies. Given racial genetic differences it cannot be assumed that efficacy and safety results observed for White populations can be extrapolated to other races. Collaborative initiatives are needed to increase diversity within UC trials, using frameworks such as the strategies to increasing diversifying in clinical trials outlined by the FDA. This article was published in Inflammatory Bowel Diseases. The full article can be accessed here: https://doi.org/10.1093/ibd/izab362.
7. A United States expert consensus to standardize definitions, follow-up, and treatment targets for extra-intestinal manifestations in inflammatory bowel disease is a research paper bringing together several powerhouse clinicians and patient advocates to delineate consensus criteria for appropriate and optimal means of diagnosing and monitoring EIMs. Five EIMs in particular have been developed as a starting point to inform clinical practice and future trial design. Key findings include straightforward diagnostic criteria, guidance regarding who can appropriately and optimally diagnose each, and monitoring options that include patient and physician-reported outcomes. These findings will be used in a national multicenter study network to optimize the management of EIMs. This article was published in Alimentary Pharmacology & Therapeutics (AP&T). The full article can be accessed here: https://doi.org/10.1111/apt.16853.
8. Hospitalization Experiences and Post-traumatic Stress in Inflammatory Bowel Disease: Opportunities for Change is a research study looking at medical trauma related to IBD (IBD-PTS). IBD-PTS affects approximately 25% of patients and is associated with poor outcomes. 40% of patients stated a hospitalization was a source of IBD-PTS. Frequent anxiety while hospitalized increased the odds of IBD-PTS 2 to 4 times. Poorly managed anxiety and pain demonstrate the greatest chance for IBD-PTS development. Positive interactions with the medical team may help mitigate in-hospital IBD-PTS development. This article was published in Inflammatory Bowel Diseases. The full article can be accessed here: https://doi.org/10.1093/ibd/izac148.
9. Breaking Down the Boxes-Time to Reshape Demographic Data is a research commentary highlighting the nuanced, complex, and inadequate check-box system of identifying race and ethnicity. We argue that current demographic collection methods are flawed and fail to recognize multiracial and multiethnic individuals, thereby compromising clinical care and research. Boxes labeled “other” further stigmatize patient identity and otherize patients from racial and ethnic minority groups and blended heritage. This oversimplified method further marginalizes those with complex racial identities and engenders feelings of mistrust toward the health care system. We argue that we need a more inclusive healthcare demographic system, one that doesn’t necessarily “box” people into various identities. This article was published in JAMA Pediatrics. The full article can be accessed here: https://doi.org/10.1001/jamapediatrics.2022.2774.
10. Identifying Care Challenges as Opportunities for Research and Education in Inflammatory Bowel Disease in South Asia is a research commentary looking at the journey of a patient with IBD in South Asia (SA). With the increasing incidence and prevalence of IBD in SA, the health care–related economic toll and psychosocial challenges demand a more urgent call to action in preventive research and increasing access to early, affordable, advanced therapies to prevent morbidity and mortality. In this commentary, we identify numerous challenges and remain hopeful that they will serve as avenues for productive research and advocacy in elevating the quality of life for patients with IBD in SA. This article was published in Gastroenterology. The full article can be accessed here: https://doi.org/10.1053/j.gastro.2022.08.051.
11. Sociocultural Considerations for Food-Related Quality of Life in Inflammatory Bowel Disease is a research paper providing an overview of the following concepts:
- Food-related quality of life (FRQoL) involves the influence of diet, eating patterns, and
food-related anxiety on quality of life. - Food avoidance and restrictive eating has been identified as a contributor to reduced
FRQoL in inflammatory bowel disease (IBD). - Sociocultural influences on FRQoL in IBD may include food culture, diet acculturation,
diet-related disparities, food insecurity, and diet quality.
The article was published in Gastroenterology Clinics of America. The full article can be found here: https://doi.org/10.1016/j.gtc.2022.07.013
12. Clostridioides difficile Infection in the Context of Aggressive Inflammatory Bowel Disease was published in the Journal of Gastrointestinal Infections. C. diff infections have been described as rare in the developing world, hence this journal was interested in showcasing an aggressive case of c. diff in IBD for physicians to learn from, diagnose, and treat appropriately. The full article can be found here: 19_76-77_22230008.pdf (thieme.in).
…with more research forthcoming!