NDLI: Health equity innovation in precision medicine: data stewardship and agency to expand representation in clinicogenomics

Content Provider	Springer Nature : BioMed Central
Author	Silva, Patrick J. Rahimzadeh, Vasiliki Powell, Reid Husain, Junaid Grossman, Scott Hansen, Adam Hinkel, Jennifer Rosengarten, Rafael Ory, Marcia G. Ramos, Kenneth S.
Abstract	Most forms of clinical research examine a very minute cross section of the patient journey. Much of the knowledge and evidence base driving current genomic medicine practice entails blind spots arising from underrepresentation and lack of research participation in clinicogenomic databases. The flaws are perpetuated in AI models and clinical practice guidelines that reflect the lack of diversity in data being used. Participation in clinical research and biobanks is impeded in many populations due to a variety of factors that include knowledge, trust, healthcare access, administrative barriers, and technology gaps. A recent symposium brought industry, clinical, and research participants in clinicogenomics to discuss practical challenges and potential for new data sharing models that are patient centric and federated in nature and can address health disparities that might be perpetuated by lack of diversity in clinicogenomic research, biobanks, and datasets. Clinical data governance was recognized as a multiagent problem, and governance practices need to be more patient centric to address most barriers. Digital tools that preserve privacy, document provenance, and enable the management of data as intellectual property have great promise. Policy updates realigning and rationalizing clinical data governance practices are warranted.
Related Links	https://health-policy-systems.biomedcentral.com/counter/pdf/10.1186/s12961-024-01258-9.pdf
Ending Page	12
Page Count	12
Starting Page	1
File Format	HTM / HTML
ISSN	14784505
DOI	10.1186/s12961-024-01258-9
Journal	Health Research Policy and Systems
Issue Number	1
Volume Number	22
Language	English
Publisher	BioMed Central
Publisher Date	2024-12-19
Access Restriction	Open
Subject Keyword	Health Administration R & D Technology Policy Medicine Public Health Health Services Research Health Policy Health equity Precision medicine Clinicogenomic registries Data infrastructure Interoperability R & D/Technology Policy Medicine/Public Health
Content Type	Text
Subject	Health Policy
Journal Impact Factor	3.6/2023
5-Year Journal Impact Factor	4.3/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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