Table 3.
Knowledge gaps and uncertainties (Etheredge, 2007) [1] | Perspectives from the literature (2007-2017) | Areas for considering the way forward |
Diffused responsibility | Robust discussion of the need for leadership and coordination across various stakeholders, research, policy, and practice. Tools exist for development of new technologies; however, they appear to be largely segregated into those for enhancing research vs practice, leading to disparate regulatory oversight | Further examination is needed of stakeholder perspectives of funding and responsibility for supporting research. Need for a better understanding of the roles and responsibilities of those involved in research from collection to sharing and implementation |
Concerns about clinical trials | The past decade has seen a variety of innovations for enhancing research as well as clinical care, along with the emergence of networks and platforms for trials and studies across various clinical contexts. The literature sees a continued need for clinical trials to support precision medicine but asserts the need for ensuring that participants are well-informed about risks and benefits of participating, and that sampling and distribution of benefits are equitable | Continued examination of public needs, attitudes, beliefs, and knowledge about participating in research and clinical trials, especially at a systemic level of health research and care data agglomeration and learning cycles |
Consequences of underinvestment | The literature suggests that the emergence of networks and platforms, as well as the increasing use of the EHRa has facilitated investment in evidence-based research. However, there is a need for ensuring that data are interoperable and meaningful, that studies and data are reliable and valid, and that the public is better able to envision its role in research | Need for an enhanced design of the EHR to increase interoperability, standardization, and quality of data to ensure that findings are translatable and generalizable. Ensuring adequate regulation of research and informed consent for participants |
Genetics and genomics-based medicine | Data quality, reliability, and validity are critical to genetics and genomics-based medicine. The literature primarily discusses a need for ensuring the just and equitable distribution of benefits and minimization of risks | Sampling must include patient populations beyond the socioeconomic environment of a hospital or region, and rigorous inclusion and exclusion criteria |
Overall system performance | The literature extensively discusses the EHR as a resource for improving quality; several articles urge for a consideration of research vs quality improvement. In addition, there is a need for improving and developing curricula in academic medical centers on research and clinical safety and quality | Moving the LHSb forward requires further theoretical consideration of research vs quality improvement. The literature is mixed and defining boundaries will be beneficial to examining the policy and practice implications of rapid learning |
aEHR: electronic health record.
bLHS: Learning Health System.