Generating Knowledge from Healthcare Practice
- Our Programs
- Our Vision & Mission
- PCORI's New Strategic Plan
- Financials and Reports
- Evaluating Our Work
- Executive Team
- Office of the Executive Director
- Program Support and Information Management
- Staff Conflict of Interest Disclosures
- PCORI's Advisory Panels
- Procurement Opportunities
Past Opportunities to Provide Input
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Better integration of research and practice can speed the production and influence of evidence-based health information that can answer questions that patients, clinicians, and health systems face every day. And ideally, what is learned in practice would feed into additional research.
This isn’t the way things have traditionally worked. But learning healthcare systems are now being designed to maximize the connections between practice and research, partly by capitalizing on the increasingly vast stores of digital data stored in electronic health records (EHRs).
Earlier this year, PCORI sponsored two workshops, held by the Institute of Medicine (IOM) that focused on research strategies for generating practical evidence from information routinely collected during clinical practice. The workshops explored how health systems can seamlessly generate knowledge from the practice of health care and rapidly apply this knowledge to drive continuous improvements in care delivery.
During the first workshop, researchers and healthcare system leaders, both administrative and clinical, discussed how to develop such systems and make them sustainable. In the second, health system executive officers considered new opportunities for closer integration of research and healthcare delivery. A publication summarizing the discussions is now available. I invite you to take a look.
The IOM meetings were prompted in part by PCORnet, the national patient-centered clinical research network PCORI is now developing. To foster large-scale clinical research, PCORnet is establishing an infrastructure for observational studies and interventional trials. If PCORnet and its participating networks are to be sustainable long term, they must demonstrate their value to the many healthcare stakeholders. Developing, operating, and maintaining such research infrastructure requires significant attention, time, and other resources, which are sometimes regarded as resources taken away from other healthcare-delivery activities.
Research Networks and Business Practice
During the workshop with health system executives, several noted that continuous assessment and improvement should be a core business practice. Belonging to a research network enables an organization to improve care for individual patients and the sustainability of the healthcare system, as well as address important questions regarding national health care, said Jonathan Perlin of the hospital company HCA Healthcare.
PCORnet gives health systems the opportunity to build the infrastructure required to maximize return on their huge investment in creating EHRs, said John Warner of the University of Texas Southwestern Hospitals and Clinics. The clinical data research networks in PCORnet are accelerating their efforts to find appropriate ways to use EHRs in the research context, such as alerting clinicians that a patient may be eligible for a new clinical trial.
Patients need to be made aware of the benefits of belonging to a healthcare system that engages in research and belongs to PCORnet, said Bray Patrick-Lake of the Duke Translational Medicine Institute and a member of the PCORnet Executive Leadership Committee. Systems that are attuned to, and engaged in, research have their antennas up for rigorous evidence to guide patient care. Moreover, as noted by Sally Okun of Patients Like Me, a system that is learning from each patient lets healthcare professionals do their jobs to the highest degree of excellence.
To make the most of an organization’s limited resources, several speakers recommended alignment of research initiatives with organizational goals, priorities, and infrastructure planning. For example, they suggested that, when designing research, an organization should take advantage of performance-improvement initiatives, consider provider burden, and weigh the potential for expected findings to affect clinical practice.
Areas of Opportunity
The workshops highlighted areas of opportunity for generating knowledge from healthcare practice. One is the sustainability of patient partnerships. Speakers noted that patients are eager to participate in research that addresses their concerns and questions. New platforms and methodologies provide opportunities to better capture patient experience and perspectives and to enable health systems to learn from that input.
Another opportunity is more effective implementation of research findings, both within and beyond an individual system. During the final workshop session, Eric Larson of Group Health noted the need to advance the science of implementation to make better use of the information that already exists—and will be collected—to effect major changes in national health care.
The challenge of intertwining research and care is complex, and the benefits of doing so may not be felt immediately in either the research enterprise or in healthcare organizations that aspire to be learning systems. We hope that PCORnet will catalyze patients, system leaders, and researchers to unite and improve the current state. Then, we can do much more with the knowledge we're generating—an achievement that would benefit everyone.