Events

Meeting Focus: Patient ownership of health data – implications for a learning health system. Motivating Questions: 1. Potential: Countless health data points are generated and collected daily in routine care and treatment, through research studies, by personal assessment and monitoring activities – yet only a tiny fraction are applied for care improvement or treatment discovery. If all health data could be available in a protected fashion for new insights, what might be the benefits for health care and health progress? 2. Barriers: To what extent are uncertainties about data ownership and control presenting a rate-limiting problem? How much do institutional competitive forces present an issue? Is the interpretation of institutional privacy regulations a barrier? 3. Ownership implications: If it is clear that individuals own their personal data, what access, control, and use protocols are necessary to facilitate data application for care improvement and discovery? How can the necessary infrastructure be supported? 4. Strategies: What issues and strategies take priority to catalyze transformative change? What are the stakeholder responsibilities, how can they be mobilized, and is there a constructive role for the National Academy of Medicine? Outcomes Anticipated: Establishment of a time-limited NAM Working Group to elaborate on issues, implications, and approaches for fostering patient data ownership and control of health data as a strategy for health progress.

Join us on April 25, from 2 – 3pm for the third and final webinar in Improving Care for High-Need Patients: A Webinar Series. 

Join us on March 29, from 2 – 3pm for the second webinar in Improving Care for High-Need Patients: A Webinar Series. 

The biannual members meeting of the Leadership Consortium for a Value & Science-Driven Health System occurred on Wednesday, March 21. The meeting centered around generating stakeholder demand and action for data sharing, linkage, and use for continuous learning.

An ad hoc convening activity, under the auspices of the NAM Leadership Consortium for a Value & Science-Driven Health System, the Value Incentives & Systems Innovation Collaborative (VISIC) seeks to build on the foundation of prior work engaged by the Consortium to develop a learning health system by convening organizations and individuals actively working to design, develop, test, and evaluate innovative approaches to shifting health care payment models in ways that reward value, and develop and apply system-based tools and processes for improving health and health care.

On November 17, 2017, the Systems Approaches for Health Innovation Collaborative (SAHIC) met to review the framework and content of SAHIC discussion paper on systems approaches.

This webinar is intended to describe the landscape of quality metric reporting and the opportunities for reducing measurement burden through efforts to measure what matters most.

An ad hoc convening activity, under the auspices of the NAM Leadership Consortium for a Value & Science-Driven Health System, the Value Incentives & Systems Innovation Collaborative (VISIC) seeks to build on the foundation of prior work engaged by the Consortium to develop a learning health system by convening organizations and individuals actively working to design, develop, test, and evaluate innovative approaches to shifting health care payment models in ways that reward value, and develop and apply system-based tools and processes for improving health and health care.

On July 7, 2015, a meeting of the Care Culture and Decision-making Innovation Collaborative (CCDmIC) was held to identify cultural factors and decision tools that inform and facilitate patient and family involvement in decision-making.

On March 18, 2015, the Roundtable on Value & Science-Driven Health Care will hold a meeting of its members with a focus on disruptive innovation in health care: the changing roles for patients, families, and the public.

On September 24, 2014, theRoundtable on Value & Science-Driven Health Care will hold a meeting of its members with a focus on improving value in health care through a discussion of promise, performance, and priorities.

On July 17, 2014, a meeting of the Evidence Communication Innovation Collaborative (ECIC) was held to review tools, strategies, and priorities in the roles of clinicians, patients, and families in shared decision making for advanced illness and end-of-life circumstances.

On June 20, 2014, a meeting of Health System Leaders Working Towards High-Value Care through Integration of Care and Research was held.

On May 30, 2014, a meeting of the Digital Learning Collaborative (DLC) was held together with the Learning Healthcare Community’s Essential Standards to Enable Learning (ESTEL) working group, to convene essential stakeholders, including standards groups, federal agencies, academic health systems (AHSs), and electronic health record (EHR) and research technology vendors around the issue of the implementing standards-based EHR-enabled research.

On May 12, 2014, a meeting of the Clinical Effectiveness Research Innovation Collaborative (CERIC) considered practical, community-wide implementation of a continuously learning health system, using the Lake Nona, FL community as a laboratory.

On March 27, 2014, the Best Practices Innovation Collaborative (BPIC) met to review progress and next steps to advance BPIC’s collaborative work on the patient’s role on the health care team.

On March 12, 2014, the Roundtable on Value & Science-Driven Health Care will hold a meeting of its members with a focus on disruptive innovation in health care: the changing roles for patients, families, and the public.

On December 6, 2013, a meeting of the Evidence Communication Innovation Collaborative (ECIC) was held to review progress and next steps related to patients’ attitudes, roles, and opportunities in advancing the use of clinical data for new knowledge.

On November 11, 2013, this meeting, a follow-on activity to the IOM workshop Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvements, aims to increase the networked communication with and among the leadership of the growing numbers of hospital- and health care center-based patient and family advisory groups.

On November 4, 2013, the Value Incentives Learning Collaborative met to discuss value incentives in the light of recent projections for health care spending.

On October 31, 2013, a workshop, sponsored by the Patient-Centered Outcomes Research Institute (PCORI) and convened by the Institute of Medicine, will consider in detail the issues and activities required of the National Patient-Centered Clinical Research Network (NCRN) in planning and implementing their inter-network data harmonization efforts.

On July 25, 2013, the Clinical Effectiveness Research Innovation Collaborative (CERIC) met to explore key action items related to the changing state of clinical research.

On June 9, 2013, the Evidence Communication Innovation Collaborative (ECIC) met to review progress and next steps to advance ECIC’s collaborative work on patients’ attitudes on data sharing in a variety of settings.

On March 1, 2013, the Best Practices Innovation Collaborative (BPIC) met to review progress and next steps to advance BPIC’s collaborative work on the patient’s role on the care team.

At this meeting of the Digital Learning Collaborative, participants will: Identify, highlight, and advance solutions to key challenges in the advancement of science and value-driven health by leveraging expertise in health information technology. Hold working sessions of DLC groups undertaking quantification of return on investment and outlining conceptual and practical components of data-driven medicine. Highlight solutions including modular platforms, opportunities for patient contribution to health records, and approaches to information integration, given the key challenges of increasing information complexity and minimal patient engagement facing clinical information technology in health care. Consider updates on efforts of shared priority underway by other organizations and consortia. If you are interested in attending as an observer, please e-mail Elizabeth Johnston at ejohnston@nas.edu.

At this topic-specific meeting of the Clinical Effectiveness Research Innovation Collaborative, meeting participants will: Discuss conceptual, ethical, and practical issues in continuous health care learning and improvement reviewed in the Hastings Center Report learning health system supplement. Highlight examples of continuous improvement efforts that have run into issues due to the current oversight framework. Identify areas in which the field is in need of practical guidance, and suggest approaches to developing that guidance. If you are interested in observing the meeting via webconference, please use the WebEx link below. If you have any questions about the meeting or webconference, please contact Valerie Rohrbach at vrohrbach@nas.edu.

The Roundtable on Value & Science-Driven Health Care will hold a meeting of its members.

At this meeting, participants in the Evidence Communication Innovation Collaborative (ECIC) will consider possible ECIC actions and proposals for improving tools and messaging around shared decision making; review ECIC/PatientsLikeMe survey findings on patient attitudes around health data, its use, and its protection; and identify opportunities for collaboration among ECIC participants on effective messaging on the protected use of health data for care improvement.

At this kick-off meeting, participants will engage leaders from engineering and health care for practical systems-based approaches to achieve best care at lower cost; identify lessons learned to date in applying engineering principles to health care; and provide observations and insights for the Moore Foundation-supported Hopkins-based ICU patient safety project.

At the October 23 meeting, Collaborative members will review progress, reaction and impact to date, and next steps to advance BPIC’s collaborative work on common reference points, expectations and values for team-based care and identify opportunities to increase uptake of team-based care principles via online and electronic platforms for education and collaboration.

This meeting is the 10th meeting of the Roundtable Members for the Innovation Collaborative.

This meeting of the Digital Learning Collaborative will focus on exploring opportunities for the Digital Learning Collaborative to contribute to the advancement of science and value-driven health by leveraging expertise in health information technology; and exploring the role of health IT in providing actionable information at the point of care.

At this meeting, participants will review the current approaches and sources—both institution-specific and broadly accessible—of digital information to assist with the thought processes and workflow for clinical decision-making and consider what is known about the effectiveness and efficiency of assistance currently provided; identify functions and processes essential to advancing use of the digital health infrastructure to deliver reliable clinical content, guidance, and tools to the point of clinical decisions; and characterize the potential for improving the efficiency and effectiveness of existing efforts.

This meeting of the Value Incentives Learning Collaborative will focus on discussing value incentives given the changing landscape of health reform; reviewing and soliciting feedback on the Accelerating Pilots Collaborative project; and discussing next steps for the Collaborative, including potential new projects.

At this meeting, the participants will review and discuss working group proposals for field elements and data repository to enable harmonization of disclosures of potential conflicts of interest and identify possible priorities, steps, and responsibilities in implementing proposals or identifying alternatives.

This meeting of the Evidence Communication Innovation Collaborative will focus on reviewing findings on communicating with patients about medical evidence; considering implications for possible ECIC projects on improving medical decisions (e.g. on clinical practice, marketing, payment, standards, research); reviewing status of ECIC messaging discussion paper and next steps; and identifying opportunities for collaboration among participants in moving forward on messages and messaging principles.

The main objective of the May 29 meeting is to review factors related to the important intersection of multiple chronic conditions and clinical practice guidelines.

This meeting of the Clinical Effectiveness Research Innovation Collaborative will address: using digital health data, and its associated infrastructure, for research; strategies for addressing challenges to digitally-supported clinical research; and identify CERIC priority areas and potential contributions for the near term.

The Best Practices Innovation Collaborative of the IOM Roundtable on Value and Science-Driven Health Care held a meeting on February 28, 2012. This meeting focused on reviewing principles and expectations developed for team-based care to serve as common reference points guiding collaboration to improve care, improve health, and reduce costs.

On October 28, 2011, the Evidence Communication Innovation Collaborative held a meeting.

On October 11, 2011, the Value Incentives Learning Collaborative held a meeting.

This meeting of the Value Incentives Innovation Collaborative, held on June 15, 2011, will focus on implementation of ACO regulations, measuring the success of value incentives, and engaging patients in value initiatives.