Health Datapalooza Highlights Key Challenges for Ongoing Research
Last week I attended Health Datapalooza VII, an annual conference where over 1,400 experts gathered to discuss how to bring data to life in ways that matter in health and health care. I wanted to share a few post-conference reflections on how AHRQ can address some of the important issues raised.
First, traditional clinical data doesn’t tell the whole story. Evidence shared during conference sessions suggests that key drivers of health and cost can include patients’ social, environmental, cultural, and personal preference factors. Recognizing the value of these patient contextual data, AHRQ recently indicated interest in generating knowledge about how clinical teams will use a patient’s values, preferences, and personal, social, and clinical context to formulate and use plans of care in partnership with patients, caregivers, and families.
In addition to the use of patient contextual data, patient-reported outcomes (PROs) can improve health care delivery and patient experiences of care. There is a need to facilitate the collection and use of PROs and patient contextual data in primary care in a manner that is efficient, actionable by providers, supports patients' engagement with their health and care, and improves clinical processes and outcomes. Toward that end, AHRQ recently published a Special Emphasis Notice to support research on how health IT can facilitate the collection and use of patient-reported outcomes and patient contextual data to improve the quality and outcomes of care in primary and other ambulatory settings.
Secondly, we need to do more work on data harmonization, so that with appropriate privacy and security measures in place, data can be shared effectively and efficiently for care, quality improvement, population health and research. I heard one attendee remark that her hospital employs six people to report patient data to registries! This is largely due to the variability of clinical data element definitions across required reporting systems. The AHRQ Registry of Patient Registries (RoPR) project is helping registries adopt common definitions. AHRQ’s RoPR team will convene a series of clinical topic-specific working groups to discuss the various definitions currently used and how they can be harmonized for outcome measures across data collection and reporting systems.
Finally, we also need to do more work to ensure that electronic health data captured and shared are of the highest quality. The Electronic Data Methods (EDM) Forum, established by AHRQ in 2010, publishes eGEMs, a peer-reviewed publication that shares findings about innovative methods, tools, and approaches to advance the use of electronic health data, including approaches to achieve data quality. Moreover, poor data quality is a safety issue, and AHRQ is interested in understanding what contributes to the safe use of health IT. AHRQ seeks grant applications that will conduct research on safe health IT practices related to the design, implementation, usability, and safe use of health IT by all users, including patients.
We look forward to interfacing with key stakeholders to continue AHRQ’s important health IT research work to address some of the key challenges discussed during Health Datapalooza VII.
Note: Chris Dymek, Ed.D. joined the Agency for Healthcare Research and Quality in February as the Director of the Division of Health Information Technology in AHRQ’s Center for Evidence and Practice Improvement.
Page originally created May 2016