Building sustainable multi-functional prospective electronic clinical data systems.

A better alignment in the goals of the biomedical research enterprise and the health care delivery system can help fill the large gaps in our knowledge of the impact of clinical interventions on patient outcomes in the real world. There are several initiatives underway to align the research priorities of patients, providers, researchers, and policy makers. These include Agency for Healthcare Research and Quality (AHRQ)-supported projects to build flexible prospective clinical electronic data infrastructure that meet the needs of these diverse users. AHRQ has previously supported the creation of 2 distributed research networks as a new approach to conduct comparative effectiveness research (CER) while protecting a patient's confidential information and the proprietary needs of a clinical organization. It has applied its experience in building these networks in directing the American Recovery and Reinvestment Act funds for CER to support new clinical electronic infrastructure projects that can be used for several purposes including CER, quality improvement, clinical decision support, and disease surveillance. In addition, AHRQ has funded a new Electronic Data Methods forum to advance the methods in clinical informatics, research analytics, and governance by actively engaging investigators from the American Recovery and Reinvestment Act-funded projects and external stakeholders.

Designing a "Thinking System" to Reduce the Human Burden of Care Delivery.

Cancer patients interact with clinicians who are distributed across locations and organizations. This makes it difficult to coordinate care and adds to the burden of cancer care delivery. Failures in care coordination can harm patients. The rapid growth in the number of cancer survivors and the increasing complexity of cancer care has kindled an interest in new care delivery models. Information technology (IT) is an important component of care delivery. While IT can potentially enhance collaborative work among people distributed across locations, organizations and time, the current design and implementation of health IT adds to the human burden and often makes it a part of the problem instead of the solution. A new paradigm is needed, therefore, to drive innovations that reframe health IT as an enabler (and a component) of a "thinking system," in which patients, caregivers, and clinicians, even when distributed across locations and time, can collaborate to deliver high-quality care while decreasing the burden of care delivery. In a thinking system, the design of collaborative work in health care delivery is based on an understanding of complex interplay among social and technological components. We propose six core design properties for a thinking system: task coordination; information curation; creative and flexible organizing; establishing a common ground; continuity and connection; and co-production. A thinking system is needed to address the complexity of coordination, meet the rising expectation of personalized care, relieve the human burden in care delivery, and to deliver the best quality care that modern science can provide.

Information technology-enabled team-based, patient-centered care: The example of depression screening and management in cancer care.

The existing healthcare delivery systems across the world need to be redesigned to ensure high-quality care is delivered to all patients. This redesign needs to ensure care is knowledge-based, patient-centered and systems-minded. The rapid advances in the capabilities of information and communication technology and its recent rapid adoption in healthcare delivery have ensured this technology will play a vital role in the redesign of the healthcare delivery system. This commentary highlights promising new developments in health information technology (IT) that can support patient engagement and self-management as well as team-based, patient-centered care. Collaborative care is an effective approach to screen and treat depression in cancer patients and it is a good example of the benefits of team-based and patient-centered care. However, this approach was developed prior to the widespread adoption and use of health IT. We provide examples to illustrate how health IT can improve prevention and treatment of depression in cancer patients. We found several knowledge gaps that limit our ability to realize the full potential of health IT in the context of cancer and comorbid depression care. These gaps need to be filled to improve patient engagement; enhance the reach and effectiveness of collaborative care and web-based programs to prevent and treat depression in cancer patients. We also identify knowledge gaps in health IT design and implementation. Filling these gaps will help shape policies that enable clinical teams to deliver high-quality cancer care globally.

Beneficial impact of genome projects on tuberculosis control.

The M. tuberculosis genome project is a landmark achievement in the history of TB research. The DNA sequence has provided valuable insights, along with a few surprises, into the complete genetic complement of M. tuberculosis. This information has been used to gain a better understanding of isoniazid-induced alteration in gene expression. It also has been used to construct a genealogy tree of different BCG strains, besides identifying genes that may be responsible for the human-specificity of M. tuberculosis. The impact of this project is far-reaching and in the next few years should yield innovative vaccines and therapeutic agents, besides aiding in the rapid and accurate diagnosis of TB.

Building electronic data infrastructure for comparative effectiveness research: accomplishments, lessons learned and future steps.

There are large gaps in our knowledge on the potential impact of diagnostics and therapeutics on outcomes of patients treated in the real world. Comparative effectiveness research aims to fill these gaps to maximize effectiveness of these interventions. Health information technology has the potential to dramatically improve the practice of medicine and of research. This is an overview of about US$100 million of American Recovery and Reinvestment Act investment in 12 projects managed by the Agency for Healthcare Research and Quality to build an electronic clinical data infrastructure that connects research with healthcare delivery. The achievements and lessons learned from these projects provided a foundation for the National Patient-Centered Clinical Research Network (PCORnet)and will help to guide future infrastructure development needed to build an efficient, scalable and sustainable learning health system.