Dr. Dong Dong Full Biography

Biography

Driven by a commitment to justice, equity, and intersectionality within public health, Dr. Dong embodies an interdisciplinary approach. Her background in communication and epidemiology fuels her belief that complex public health challenges require collaborative, cross-disciplinary action. Her work integrates social science perspectives to complement health sciences, focusing on how social dynamics shape health experiences. Dr. Dong employs a wide array of methodologies, including meta-ethnography, multi-sited ethnography, in-depth interviews, extended case studies, cross-sectional surveys, patient registries, Q methodology, patient journey analysis, and studies of the natural history of rare diseases, adapting them to the needs of public health research. To ground her research, she cultivates close, long-term relationships with underprivileged and underserved populations, recognizing them as central to knowledge creation. Dr. Dong has been awarded 65 grants to date, 32 as Principal Investigator (PI) and 33 as Co-Investigator, totaling US$19.43 million (US$2.05 million as PI/PC). More than a third of her 100+ SCIE/SSCI-indexed journal articles focus on rare diseases, alongside her extensive contributions to white papers, conference proceedings, and four published books.

A people-centered approach is central to Dr. Dong’s research. She pioneers community-academic partnerships, a nascent field in both Hong Kong and Mainland China. Rare diseases are a recurring focus. Departing from the typical biomedical view of disablement, she explores the possibilities inherent in the rare disease experience. Her work includes developing large-scale patient registry databases in China, which serve to illuminate the medical and social conditions of patients, monitor their quality of life, and evaluate the effectiveness of interventions. In Hong Kong, her work with multicultural communities has brought forth crucial questions of communicative injustice and discrimination in the health experiences of South Asians, often explored through a gendered lens. Dr. Dong’s recent research also delves into the science and technology of reproductive health and genetic literacy, investigating how the interplay between state discourse, genetic technology, and informed consent shapes bio-power and raises critical bioethical concerns.

Dr. Dong’s collaborative work with patients, NGOs, grassroots organizations, medical professionals, anthropologists, and sociologists has contributed to policy advancements at the national and international levels. As a leader in the World Mental Health International College Student Initiative, she is a member of the Qualitative Research Workgroup's steering committee, contributing her expertise to this global collaboration. Dr. Dong founded a Rare Disease Real-world Data Lab in Shenzhen Research Institute, CUHK, producing over twenty white papers on the General Social Survey of Chinese Patients with Rare Diseases. She also serves on the boards of the Asian Pacific Alliance of Rare Disease Organisations (APARDO), China Alliance for Rare Diseases, Beijing Society of Rare Disease Clinical Care and Accessibility, The Illness Challenge Foundation, and Beijing Aili Myasthenia Gravis Care Center. Furthermore, she is a foreign member of the MGNet Rare Disease Clinical Research Consortium and the Rare Diseases Clinical Research Network of the National Institute of Health in the U.S.A.. Dr. Dong is a recipient of the 2022 Equity Initiative Fellowship and currently serves as a Global Senior Fellow of the Atlantic Institute. Her work on socio-economic burdens in public health, patient narratives, and cross-cultural observations on illness has been featured extensively in the media.

Education

Ph.D.
Major: Mass Communication, Minor: Epidemiology, University of Minnesota, Twin Cities
M.Phil.
Mass Communication, The Chinese University of Hong Kong
B.A.
Journalism, Fudan University

Professional Experience

Current academic position

Assistant Professor, JC School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, 09/2021-present

Other affiliations

Professional Societies

Selected publications

International journal publications related to rare diseases

(# co-first author; *corresponding author)

Selected books related to rare diseases

Selected invited presentations/lectures on rare disease

Selected refereed conference proceedings and presentations related to rare diseases

External Service

NGO Board member

Patient Organization Advisory Committee

Knowledge Transfer Activities

Public education & Newspaper commentaries

Selected media interviews

Selected invited presentations/lectures on rare disease

Selected refereed conference proceedings and presentations related to rare diseases