Informing National Priorities for Research on the Use of Health IT to Support Patient-Centered Communication and Care Coordination for Cancer
Lygeia Ricciardi and Abdul Shaikh | July 9, 2012
A diverse group of researchers, industry leaders, clinicians, and patient advocates gathered in Washington, D.C. on June 7, 2012 to provide input on a national research agenda for patient engagement using health information technology (health IT) to support patient-centered communication and care coordination for cancer.
The roundtable was convened by the Office of the National Coordinator for Health Information Technology (ONC), the National Cancer Institute (NCI) at the National Institutes for Health (NIH), and the eHealth Initiative (eHI). More than 40 participants representing a diverse cross-section of the cancer care and IT communities contributed to the discussion of needs and gaps in cancer communication and care coordination, potential health IT solutions, and opportunities for research.
Themes to Help Inform a National Research Agenda
Over the course of the discussion, several themes related to potential needs and opportunities for research on the use of health IT to support patient-centered communication and care coordination for cancer emerged.
- The opportunity to empower an engaged population. Cancer is a condition for which many patients, their families, and caregivers are highly engaged and motivated to act. How can health IT help empower patients and other stakeholders across the cancer continuum?
- Data interpretation and decision support. Enabling cancer patients to access their data is a crucial step. Beyond this, there is also a need for tools that help patients, families, and caregivers interpret data to support care coordination including shared decision-making and collaborative self-management.
- Balancing the needs of individuals and populations. The advancement of genomic sequencing technology and collaborative research in molecular diagnostics offers the promise of accelerating discovery of more targeted and effective therapies. However, it is equally important to understand unique patient needs and opportunities for leveraging health IT based on individual and contextual factors such as age, race-ethnicity, psychosocial factors, and socioeconomic status across the cancer continuum.
- The influence of culture, incentives and regulation. Despite the promise of health IT, sociopolitical factors, policy, and financial disincentives have limited the dissemination and impact of existing technologies for patient-centered communication and care coordination in cancer.
- Examining the future and the present in parallel. National priorities for research must not only consider important questions in the field today, but also how we hope to leverage health IT to improve patient-centered communication and care coordination in cancer care in the next decade.
With these themes as a backdrop, participants offered input to help inform national priorities by proposing a number of potential focus areas for research, including scenarios for assessing the use and impact of health IT; approaches for scaling success and spurring innovation; cultural and policy barriers to adoption; and maximizing the effectiveness of health IT in cancer care for individuals, families, and populations. One of the primary recommendations that arose from the discussion highlighted the need to identify existing tools, applications, and health IT-enabled processes that are successfully promoting cancer communication and care coordination, but would benefit from dissemination and implementation science research to evaluate and scale up effective solutions.
Here is a visualization of the discussion as captured by the graphic recorder.
View the other visual recordings that summarize the roundtable discussion.
What Comes Next
With the critical issues and innovative ideas shared by participants, ONC, NCI, and eHI emerged from this meeting with a wealth of input that will be used to help inform the development of scientific priority areas for using health IT to improve patient-centered communication and care coordination for cancer. Next steps will include the publication of more detailed proceedings to share the meeting findings, an ONC-led pilot project with the state of Texas, and an environmental scan to help identify high-impact systems, applications, and tools that are successfully using health IT to improve patient-centered communication and care coordination for cancer. The purpose of the pilot is to give patients access to their information in a format they can download and use in innovative ways and to assess the impact on their experience of care.
We Want to Hear From You
Tell us what you think should be part of the National Research Agenda related to consumers’ use of health IT and cancer care!
For more information on health information technology, visit HealthIT.gov