Care Culture and Decision-Making

Nurturing a culture of shared, science-driven, and informed decision-making that places patients and families firmly at its core

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William Novelli (Co-Chair)

William D. Novelli (Co-Chair)

Mary Naylor (Co-Chair)

Mary D. Naylor (Co-Chair)

One of the four Innovation Collaboratives of the Leadership Consortium for a Value & Science-Driven Health System, the Care Culture and Decision-making Innovation Collaborative (CCDmIC) is an ad hoc convening of health care stakeholders working to change the culture of health care to deliver on the vision of a system in which all stakeholders actively and effectively work together to make shared decisions informed both by the most up to date evidence and the needs and preferences of patients, families, and the community at large. Also operating under the auspices of the CCDmIC is the National Academy of Medicine (NAM) Patient & Family Leadership Network, which supports ongoing communication, collaboration, and synergy among patient and family thought leaders to advance their equal and full engagement across the health care continuum: as equal and effective partners in care decisions, at the community and organizational level through continuous improvement initiatives, and at the policy level. The PFLN is a vibrant virtual Network that engages the nation’s patients and families in serving as effective leaders and advisors to the NAM and others to achieve better culture, better care, better value, and better health for all in a healthcare system that continuously learns and improves.

Activity Description

CCDmIC catalyzes joint activities to drive health care culture in three main areas:

Culture: Collaborative activities to ensure that the next generation of clinicians provides care that reflects patients’ preferences and values, care teams work collaboratively and in concert with patients, and health care leadership fosters the creation of a culture of care that is seamless, team-driven, and that continuously learns.

Evidence: The ability to make informed decisions requires targeted incentives and timely delivery of scientifically validated evidence at the point of decision in a format that best meets the needs of patients and family caregivers. To that end, learning health systems engage patients, families, and communities in the capture and use of information on their health and health care experiences to generate evidence and accelerate knowledge about the most effective and efficient care practices.

Engagement: The growth in awareness and opportunity for patients and families to be more engaged in their own care, as well as in the design and delivery of care at the organizational and policy levels, means it is critical to engage all health care stakeholders and accelerates the need to deepen the involvement of patients and family leadership in improving knowledge generation and value in health care, developing a culture of effective stakeholder collaboration, and the consistent, meaningful, and increasing engagement of patients, families, and communities in the design and delivery of health care in addition to personal engagement in their own health care decision-making.

This activity blends the expertise of professional organizations representing clinicians on the front lines of health care delivery, patient- and family-focused organizations, decision science practitioners, and government agencies actively involved in patient care or programs and policies centrally concerned with the identification and application of best clinical services. These professional and citizen leaders work collaboratively with individuals with relevant expertise from organizations with active, public, and patient-oriented health efforts. The aim is for an inclusive Collaborative – without walls – and participation in individual projects is structured according to interest, need, and practicality. As such, CCDmIC seeks to include a wide variety of stakeholder voices to further cultural change and patient and family engagement, including but not limited to:

  • Aging organizations
  • Business and industry groups
  • Child and maternal health organizations
  • Clinician and other professional organizations
  • Community organizations
  • Decision science experts
  • Government agencies
  • Health and health care equity and disparities experts
  • Health IT organizations
  • Hospital and health system leaders
  • Patient and family organizations
  • Patient and family advisory council and thought leaders
  • Pediatric organizations
  • Payers and insurance organizations
  • Public health organizations
  • Purchaser and employer organizations
  • Researchers
  • Women’s health organizations



Social Networking Sites and the Continuously Learning Health System: A Survey. An NAM survey indicates that nine in 10 American adults believe that their health-related data should be used to improve the care of other patients. This discussion paper explores how people value and understand health-related data sharing in a variety of contexts.

  • Core Principles & Values of Effective Team-Based Health Care. A discussion paper in which authors identify key characteristics of effective teams from the literature and uses interviews with 11 teams located in various urban and rural settings to clarify how these factors shape effective team-based care. The review is intended to help guide clinicians, patients, administrators, and other stakeholders in the delivery of high-value, team-based care focused on the goals and priorities of patients and their families.

Upcoming Meetings

In-person attendance at meetings is by invitation only due to room capacity limitations. All meetings are available by webcast, and information on joining the webcast is available on the meeting event page as the meeting approaches.

For more information, contact Anna Cupito, Research Associate, at

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