I really like the goals outlined in @Patrick_Ryan closing letter in https://www.ohdsi.org/wp-content/uploads/2024/10/OurJourney2024.pdf (page 114) (and the recent poll)
Pasting them below as non PDF nicer text. And adding numbers to them.
Perhaps a new workgroups or existing workgroups can take on some of those goals.
Maybe even have thread on the forum for each goal to get some discussion started.
I personally would like to work on few diseases for goal 13 (every disease: natural history and treatment pathways).
I suggest we come up with a finite list of disease in scope for goal 13.
And track the progress on how many we can get done each quarter. e.g., AMD (age related macular degeneration) as first disease to try for goal 13.
EXHIBITS
- OHDSI’s open science community approach to evidence generation becomes the expected behavior across stakeholders and disciplines to promote innovation, reproducibility, and collaboration.
- The OMOP Common Data Model will evolve and become recognized as the preferred international data standard for real-world evidence generation, will be seamlessly interoperable with complementary clinical data exchange standards, and will be consistently adopted across academia, industry, and government around the world.
- The number of unique data sources adopting the OMOP CDM will exceed 50,000, but organizations will also use the CDM as a mechanism to partner to advance cross organizational data linkage and participatory patient self-reporting. This will increase the completeness and longitudinal continuity of patient records, enable connections across familial generations, and improve the fitness-of-use for each integrated source across a broader set of analytic use cases.
- The OHDSI Standardized Vocabularies will provide the singular resource that maps all source terminologies and unstructured medical text into a common reference ontology, with real-time updating to reflect the current state of knowledge in medicine.
- Every organization collecting patient-level data during the routine course of clinical care will have established systems to standardize the data to the OMOP CDM using the latest OHDSI standardized vocabularies on a nightly basis, enabling daily reporting for disease surveillance and quality improvement.
- The OHDSI community will prove that real world evidence from real world data— when adhering OHDSI’s best practices and passing all objective diagnostics—can be considered just as reliable as evidence from randomized clinical trials. Opensource systems that follow these practices will become trusted by health systems, payers, and regulators for guiding clinical care and policy decisions.
- Advances in OHDSI’s open-source analytic platform will decrease the time to generate reliable real-world evidence across the OHDSI distributed network; this process will be measured in minutes, not months.
- The OHDSI Evidence Network will make it both commonplace and expected to see hundreds of databases, representing hundreds of millions of patients, be represented in network studies of every important public health question. This would ensure that the evidence we generate is replicable within similar populations and generalizable to patients across North and South America, Europe, Africa, Asia and Australia.
- The OHDSI community will represent and support all clinical subspecialties, and will become the primary source of real-world evidence to proactively fill evidence gaps needed to inform clinical guidelines around management of every disease.
- The OHDSI community will design, implement, and deliver results from more than 10,000 network studies, with the majority of research questions coming directly from patients and clinicians seeking reliable evidence to address their needs at the point-of-care.
- Discoveries across the OHDSI network about unrecognized effects of existing medical interventions will yield new indications that achieve regulatory approval due to the robustness of the real-world evidence produced within our community.
- OHDSI will freely disseminate its evidence through more than 100,000 scholarly publications, but it will also establish new modalities for evidence dissemination to more directly support clinical practice.
- Every disease will have a comprehensive real-world evidence summary that characterizes natural history and treatment pathways across the globe so we can understand patient heterogeneity, promote health equity, and recognize unmet medical needs.
- Every medical product will have a comprehensive real-world evidence surveillance summary from OHDSI that provides characterization of the incidence of all outcomes, population-level estimation of the causally attributable risk of each outcome and comparative effectiveness with all alternative treatments, and patient-level prediction models so that individuals can accurately determine their personalized risk given their medical history.
- OHDSI evidence repositories will become the primary source of knowledge underpinning foundational models to promote better health decisions and better care.