What happens when a multi-sector group of innovators gets together to discuss the power of electronic health data for transforming health care and population health? The third annual Concordium meeting took up that question by continuing the conversation from previous years’ meetings about the importance of leveraging health data in effectiveness and outcomes research, health care analytics and operations, public and population health, and quality improvement. This invitational meeting also covered some emerging practices related to consumer perspectives on patient-centered outcomes research; roles for embedded researchers; cognitive computing, data science, and big data analytics; telehealth and health information exchange; and the value of private sector partnerships.
The meeting featured a keynote talk by Gopal Khanna, M.B.A., director of the Agency for Healthcare Research and Quality (AHRQ), who focused on the value of data as a “shareable asset.” He described his vision for an AHRQ 2.0 initiative called “HSR 360,” (mentioned in this blog post) which will integrate the total picture of patient and provider experiences and quality and safety data at the point of care, and build a data ecosystem focusing on patient-centered solutions.
The new AHRQ initiative will build on the achievements and contributions of AcademyHealth’s Electronic Data Methods (EDM) Forum, which began in 2010 as a way to connect 11 AHRQ grantees working with electronic health data to improve care and grew to a community of 4,000 by 2016. Under the AHRQ-funded cooperative agreement with AcademyHealth, which ended in March 2017, the EDM Forum held several convenings, including Concordium. The EDM Forum also launched eGEMs, the online, peer-reviewed, open access journal that has more than 180,000 downloads; funded several collaborative projects; developed communities of practice, including Data Analytics for Learning Health Systems (DALHS), and Population Health Community of Practice (Pop CoP); and created over 400 freely accessible analytic products. You can read the full EDM Forum story here.
Concordium 2017’s five breakout discussion sessions facilitated rich conversation among participants on the following critical issues:
- Patient-Centered Outcomes and Consumer Perspectives, facilitated by Patricia Franklin and Mark Gorman;
- Embedded Researchers, facilitated by Becky Yano;
- Analytics and Data Science, facilitated by Gurvaneet Randhawa;
- Telehealth and Health Information Exchange, facilitated by Joy Lewis; and
- Private Sector Partnerships, facilitated by Seiji Hayashi.
Several cross-cutting themes emerged from these discussions. There was broad agreement on the need for new methods to communicate what works in consumer and community engagement and private partnerships, and on the need to re-engineer the research enterprise to promote values related to collaboration, data-sharing, accountability, and real-world evidence. Another strong area of agreement was the belief in the importance of multi-sector, team-oriented discussions to help co-create a data ecosystem that benefits consumers and provides incentives and career pathways for new data scientists to enter the field.
Specific issues raised by the discussion groups included
- The need for development of common terminology about what “patient-centeredness” means, so accountability can be improved and patient-generated data can be valued;
- The value of forward-thinking C-suite leadership to provide a safe space for innovation, which is an inherently risky business;
- The technical and organizational problems that come with legacy infrastructure and traditional IT and operational thinking, rather than systems thinking that characterizes innovation and entrepreneurship;
- The need to re-examine policy and regulatory assumptions about ownership of data, consumer access to personal health information, and data sharing across institutions;
- Ways to increase recognition and funding for discussions about embedded researchers and data scientists, and expanding these positions into population health and other fields; and
- The importance of recognizing and finding new ways to integrate data on social determinants of health with clinical information.
Another cross-cutting recommendation that emerged was to develop a Data Analytic Maturity Model, which would reflect the ability of the emerging community of population health analytics to continue to improve the quality of its work and increase available resources. The effort would begin by identifying the types of analytic questions that we typically ask and generate evidence to answer (e.g., comparative effectiveness, safety surveillance, chronic disease), then develop a way to assess analytic capability and capacity in terms of people, skills, quality of data, and ability to share date, e.g., access to collaboration platforms.
Concordium 2017 also featured three interactive plenary panels. I was privileged to monitor the first, which provided updates on EDM Forum collaborative projects completed by three different teams. Michael Kahn, University of Colorado, Denver, described the creation of a harmonized data quality assessment terminology and framework while Philip Payne, Washington University, described the Collaborative Informatics Environment for Learning on Health Outcomes (CIELO); and Adam Wilcox, University of Washington, who focused on the importance of sustaining the development and sharing of new methods for data collection, curation, and dissemination through eGEMs.
The second panel, on innovative data analytics, was moderated by Lucy Savitz of Kaiser Permanente, with Gurvaneet Randhawa, NCI; Juergen Klenk, Deloitte; Jose Morey, IBM Watson Research; and Rasu Shrestha, UPMC. The panelists described innovations in cognitive computing; new developments in the NIH Data Commons; a universal health registry platform; a consumer-mediated data bank; and ways to scale an ecosystem that supports career pathways for improving patient-centeredness and quality of care.
A third panel, moderated by Eliseo Perez-Stable of NIMHD, focused on the use of data to promote health equity. Barbara DuBuono of 3M described their use of data analytics and mapping to identify and help direct resources to disease hot spots in communities. Next, Brenda Battle described the breakthrough work by University of Chicago Medicine to engage communities in population health management and improving access to care and community benefit on Chicago’s South Side. Philip Alberti built on the previous speakers’ themes and described the health equity initiatives at AAMC, which include a community engagement toolkit for addressing social justice, social determinants, and health equity.
In sum, meeting participants re-affirmed the importance of values-based approaches to engaging individuals and communities in improving their health and health care. This will require multi-sector teams and team leaders asking the right questions in the right way to create and scale a collaborative ecosystem, with incentives and support for people to do the right thing.
AcademyHealth thanks Concordium 2017 sponsors: Kaiser Permanente, Kaiser Permanente Northwest Region's Center for Health Research, Philips, U.S. Department of Veterans Affairs, Bristol Myers Squibb and 3M.