Public Private Partnerships: Eliminating barriers to sharing, integrating, and reuse of data

Convene an advisory meeting of relevant stakeholders to develop a consensus regarding eliminating barriers to sharing, integrating, and reuse of data needed to build predictive models of disease.

2028 14.G In Progress Convene an advisory meeting of relevant stakeholders to develop a consensus regarding eliminating barriers to sharing, integrating, and reuse of data... DN 2015 AD Summit: 1A, 2C, 3A, and 6A 2018 AD Summit: 6N Workshop: Breaking Data Barriers and Scaling Behavior Change Interventions to Benefit Older Adult Health through Public-Private Partnerships Workshop: Optimizing Older Adult Care through the Use of Electronic Health Records Public Private Partnerships NIH Alzheimer’s Disease Research Summit 2015: Path to Treatment and Prevention NIH Alzheimer’s Disease Research Summit 2018: Path to Treatment and Prevention 2016

Develop recommendations for new policies and incentives to enable open, reproducible, and translatable research. These should address:

  • removing barriers to combining data from multiple sources and sharing processed data with other investigators.
  • generating combined and harmonized data sets that can be shared between investigators.
  • providing genetic and other patient-level data on a common-access cloud site where researchers can perform large-scale computational tasks without the need to download and store large data sets.
  • providing access to sponsor-level data from clinical trials to revisit those that failed to demonstrate efficacy.
  • supporting electronic consenting and other consenting models that give ownership of health care data to patients and study participants.

Summary of Key Accomplishments

NIA convened an expert panel in 2021 to discuss strategies and opportunities to expand data access and integration through public–private partnerships, including leveraging big data assets to support the implementation of interventions and to address health disparities in older adults, including individuals living with dementia. Panelists emphasized that richer, more complete datasets are needed to understand health disparities, and that adequate sustained resourcing is required to provide broad access to richer data at a lower cost.

This milestone is also supported by proceedings from the NIH Alzheimer’s Research Summits held in 2012, 2015,2018, and 2021. The 2021 Summit convened a multi-stake-holder group of experts and public advocates to addressed barriers to data sharing.

In addition, the Collaboration for Alzheimer’s Prevention (CAP) working group, in which NIA participates, established recommendations for harmonizing prevention trials procedures, cognitive and clinical outcomes and clinical trials data and biosamples sharing.

The key accomplishments summary is current as of July 2022.