Coalition for Trust in Health & Science

FAQ

Strengthening trust and confidence in information to support the health decisions of parents, families and communities.

America is experiencing a tidal wave of misinformation and disinformation, escalating already dangerously high levels of mistrust and distrust in healthcare, public health and science. As the COVID pandemic demonstrates, the tragic consequences are preventable deaths and unnecessary suffering for millions of people.

The broad health and healthcare ecosystem has reason for concern and a duty to act to ensure that everyone has the understanding of, and confidence in, evidence-based recommendations to make personally appropriate health decisions. Many are taking praise-worthy actions. However, fragmented efforts will not be sufficient to address a problem so pervasive and complex. Acting separately will lessen our impact and fail to achieve the scale commensurate to meet the challenge.

Working together, supported by a coalition infrastructure that enables collaboration across disciplines and silos, we can increase our impact and enhance the trusting relationships necessary to support the health decisions and behaviors of patients, families and communities.

What are misinformation, disinformation, mistrust, and distrust, and why do they matter?

Misinformation is false, misleading information shared without an intent to deceive.

 

Disinformation is purposively false or misleading content shared with an intent to deceive or cause harm.

 

Mistrust is a lack of confidence in scientists, health and healthcare providers and organizations to appropriately care for people’s needs in an honest, genuinely caring and professionally competent manner based on a sense of unease or intuition.

 

Distrust is a lack of confidence in those same individuals and systems of care based on knowledge, experience, or informed opinion.

 

There is a cyclical relationship between disinformation, misinformation and “medical mistrust” each enhancing the conditions for the others. The consequences of the combination of disinformation and misinformation have been blatantly apparent during the COVID pandemic. For example, the well-known and justifiable “medical distrust” among many communities of color resultng from a legacy of wrongs will require systemic corrections across health and healthcare, as well as sustained outreach to affected communities among whom trust must be restored. And, that lack of trust is now exhibited in communi4ties across the landscape including all races and ethnic groups; the wealthy and the not wealthy; the highly educated and not as highly educated; and urban, suburban and rural communities. This is a national problem that requires a national large-scale and well coordinated, sustained response.

What is the Coalition for Trust in Health & Science?

The Coaliton is being formed to provide a “big tent” that seeks to unite, perhaps for the first time ever, organizations from across the entire health ecosystem, along with additional organizations concerned with advancing trust and factual science-based decision-making. This “big tent” concept is already bringing together organizations representing health care and health systems, public health, policy, basic and applied science, pharmaceutical and device manufacturers, health care communicators, philanthropy and foundations and others.

 

The goals of the Coalition are to:

  • Contribute to a measurable increase in public trust in the health and healthcare system and, more broadly, in public health and science organizations and their representatives, so that everyone can access, understand, and have confidence in the reliability of the information they need to make evidence-based, personally appropriate health and healthcare decisions.
  • Effectively correct misinformation and counter disinformation that decreases trust in health, healthcare, public health and science and that has the potential to harm the public’s health.

 

The coalition will provide a “learning laboratory” that includes sharing, identifying and advancing the spread or scaling of strategies that work. A Coalition Compendium will provide a home for these activities. The Coalition will be flexible to respond to emerging priority challenges. The Coalition will always be sensitive to advancing health equity.

 

Under the “big tent,” groups that may differ on some issues agree to work together on this transcendent issue that unites all aspects of the health ecosystem. Members of the Coalition have a place to connect, to coordinate and, where possible, leverage and scale what works. The focus is on enhancing the public’s trust in the collective health ecosystem, combined with tangible support for science-based decisions that are critical to improved health outcomes and the reduction of premature deaths

What is the “Compendium”?

The Coalition Compendium is important tool for connection and sharing information, accessible only to members. Members are asked to contribute information about major initiatives designed to earn the public’s trust in health care, public health and science. A “living library”, the Compendium provides: a repository of member initiatives that advance the Coalition’s goals; resources that can facilitate and accelerate accomplishment of these initiatives; and summaries of relevant research findings in the areas of trust, misinformation, disinformation, mistrust, and distrust. The Compendium serves as a foundation for a number of Coalition-sponsored activities such as: offering sessions for members to share ideas and collaborate on efforts; identifying and addressing research gaps; enabling research findings to inform ongoing and new initiatives; supporting the spread of effective strategies and; fostering measurement of collective impact.

How does the Coalition operate?

Many members are already active in this field. The Coalition builds on these efforts with a goal of creating an unprecedented, powerful response to this unprecedented challenge. The Coalition has no intention to interfere with the work of its members. The Coalition will not compete with its members. Rather, it seeks to bring members together for a collective voice and to serve as a home that brings all of the pieces together for maximum clout, effect, continuous learning, and amplification. There is no financial obligation associated with joining.

 

The governance structures are still being developed and will not be completed until its members have had the opportunity to provide suggestions. This is a collaborative effort and all voices deserve to be heard as we construct the governance infrastructure. In the interim, the Coalition will be managed by the Core Convening Committee whose names are listed below.

How do organizations join? And what is happening now?

Coalition members share a common commitment: a vision and pledge, understanding that the “whole is greater than the sum of the parts.” To become a member of the Coalition, an organization agrees to–and signs–the Coalition’s Vision and Pledge:

 

OUR VISION AND PLEDGE

As members of the Coalition for Trust in Health & Science we share this vision, that:

 

All people have equitable access to and confidence in the accurate, understandable and relevant information necessary to make personally appropriate health decisions.


To achieve our vision, we must build trust in healthcare, public health and science across all segments of our society. No organization can do this alone, but together, we can create a collective effort that has an impact far greater than the sum of our individual contributions.


Therefore, we pledge to:

  • Share our vision and our commitment to action with the public, our stakeholders and each other;
  • Support efforts to advance people’s scientific and health literacy, earn public trust and improve health outcomes and health equity;
  • Work individually and collectively to correct misinformation and counter disinformation that threatens people’s health and well-being.

 

Currently, organizations are signing on, initial committees on Communications, the Compendium, and Governance are underway. A “members-only” launch will occur in February 2023 with a public launch to follow in March. We cannot continue to successfully earn the public’s trust, nor protect their health, heal and prevent unnecessary deaths contributed to by distrust and misinformation unless we come together.

What are the benefits of signing onto the Coalition?

Members have access to a place where like-minded organizations can:

  • participate in Coalition development and expansion
  •  contribute to and use the members-only Compendium to accelerate learning and effectiveness and share information about plans, strategies and outcomes
  • look across the whole of efforts and identify what is working and should be amplified and where needs exist
  • seek partners for specific initiatives
  • participate in the Coalition’s learning community • facilitate “rapid cycle debunking” of particularly egregious emerging disinformation and misinformation incidents
Who is organizing The Coalition?

The initial Core Convening Committee for this Coalition includes:

  • Reed Tuckson, Co-Founder of the Black Coalition Against Covid and Former EVP and Chief of Medical for Health Affairs at UnitedHealth Group;
  • Julie Gerberding, Chief Executive Officer, Foundation for the National Institutes of Health;
  • Mary Naylor, Marian S. Ware Professor University of Pennsylvania School of Nursing;
  • Bill Novelli, Distinguished Professor of the Practice, McDonough School of Business, Georgetown University and founder of the Campaign for Tobacco-Free Kids;
  • Sudip Parikh, Chief Executive Officer of the American Association for the Advancement of Science;
  • Mary Woolley, President of Research!America;
  • Elaine Arkin, Consultant.

As the Coalition evolves, governance mechanisms will be established consistent with achieving the goals of collegial and collaborative input and decision-making.

How can I learn more and sign on?

For more information–and for a signature version of the Vision and Pledge– please email the Core Convening Committee: advancingtrustandscibasedinfo@gmail.com