We launch the DCI Network webinar series this week with great talks from some COVID-19 biomedical data consortia leaders.
Creating these consortia is complex, and we must understand how best to develop and sustain the health data repositories. These data networks would help us create a learning health system envisioned by the National Academies of Medicine a reality. Creating a learning health system across institutions would allow us to compare outcomes and implementation strategies and develop a database of real-world evidence. To do this, we need to standardize data models and the outcome metrics that are reliable and have face validity. We need to identify the gaps in data models and create a roadmap that would help facilitate collaborations across institutions. Below are some questions that we will explore in our webinar series. I hope you can join us.
Some questions for creating Health Data Consortia:
- What are the most significant opportunities for biomedical discovery with the approach you are taking for data aggregation?
- How can we increase trust and transparency in data-sharing consortia?
- What are the potential benefits of patient-reported outcomes in large-scale data consortia?
- How can we more meaningfully engage with patients in the design and collection of data for real-world evidence?
- How can we convince more public to share their health data beyond times of concern, such as the pandemic, particularly with under-represented groups?
- How to check for differences in input-device types and account for variance in calibration?
- How can we align the key measurable outcomes collected in routine care and clinical trials to create alignment between research and clinical databases?
- How do we manage and document the differences across institutions in data granularity, models, and conversion into standardized databases?
- How do we increase the representation of underrepresented minorities in clinical trials and real-world data consortia?
- What incentives are needed to increase institutional participation in data-sharing consortia?
- What data governance models for private and public stakeholders can increase trust?
- How can we accelerate the validation of data?
- What regulatory and legal frameworks may facilitate or hinder the development of data-sharing consortia?
- Is there a model for private-public funding of data-sharing consortia that would accelerate the development of data-sharing consortia?
- How can we facilitate the consenting and sharing of data collected in personal health mobile apps to be shared with health data consortia?