- Grand challenges in humanitarian aid. Nature 2018; 559 (7713): 169–73
A qualitative study of design stakeholders' views of developing and implementing a registry-based learning health system.
Implementation science : IS
2020; 15 (1): 16
BACKGROUND: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF).METHODS: We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software.RESULTS: The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients.CONCLUSIONS: The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement.
View details for DOI 10.1186/s13012-020-0976-1
View details for PubMedID 32143678
Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review.
Genetics in medicine : official journal of the American College of Medical Genetics
We performed a systematic review of the ethical, social, and cultural issues associated with delivery of genetic services in low- and middle-income countries (LMICs).We searched 11 databases for studies addressing ethical, social, and/or cultural issues associated with clinical genetic testing and/or counselling performed in LMICs. Narrative synthesis was employed to analyze findings, and resultant themes were mapped onto the social ecological model (PROSPERO #CRD42016042894).After reviewing 13,308 articles, 192 met inclusion criteria. Nine themes emerged: (1) genetic counseling has a tendency of being directive, (2) genetic services have psychosocial consequences that require improved support, (3) medical genetics training is inadequate, (4) genetic services are difficult to access, (5) social determinants affect uptake and understanding of genetic services, (6) social stigma is often associated with genetic disease, (7) family values are at risk of disruption by genetic services, (8) religious principles pose barriers to acceptability and utilization of genetic services, and (9) cultural beliefs and practices influence uptake of information and understanding of genetic disease.We identified a number of complex and interrelated ethical, cultural, and social issues with implications implications for further development of genetic services in LMICs.
View details for DOI 10.1038/s41436-018-0090-9
View details for PubMedID 30072741
Exploring the State of Health Policy in Canada and Abroad with Professor John Lavis
UNIVERSITY OF TORONTO MEDICAL JOURNAL
2015; 93 (1): 14–17
View details for Web of Science ID 000378797700005
- Genomic alterations in ductal carcinoma in situ compared with Invasive breast cancer: a quantitative real-time PCR study AMER ASSOC CANCER RESEARCH. 2015
- Standardizing the analysis of Ki-67 immunohistochemical assays AMER ASSOC CANCER RESEARCH. 2015