As our nation continues to reel from the impact of the dual crises of the COVID-19 pandemic and racial strife, we increasingly understand that trust in each other and our institutions will be essential for progress. However, data from the last several decades show a progressive erosion of trust. Absent a foundation of trust, we have watched pseudo-science and conspiracy theories gain traction on social media and other domains with real-world consequences. As AcademyHealth pointed out in a denouncement of the assault on the U.S. Capitol, “the growing fragmentation of our public discourse and the embrace of opinion as fact has evolved from disturbing trend to direct threat to our country and people.”
As we look forward to a virtual gathering next week focused on health data and policy innovation, at least three dimensions of trust are essential to addressing the health and health care challenges ahead: trust within historically disenfranchised communities to achieve equity; trust in science and scientific innovation; and trust in health care itself. All three are needed if we are to achieve better health and health care for all.
Trust As A Foundation For Achieving Equity
The pandemic has brought health inequities into sharp relief and reignited calls for progress. AcademyHealth, SCAN Group and Health Plan, and Health Affairs have been among a large number of health care organizations making public commitments to tackle racism in all its forms within our community and spheres of influence. Many of these statements have acknowledged the long, and often willfully ignored, history of racism throughout American systems of power. As Nikole Hannah-Jones, author of the New York Times Magazine’s 1619 Project, noted at a conference in early 2020: “Across all parts of our society, there is little understanding of the foundational role of slavery in the American story, but the truth is that anti-Black racism is part of the DNA of this country.”
Naturally, this long history has damaged trust and we as a health research, care, and policy community have much to do to build trust with communities of color by becoming trustworthy ourselves. This broken trust has had serious consequences. One salient example — particularly as we consider equitable distribution of the COVID vaccine — is the prevalent rates of vaccine hesitancy among communities of color. Our role as the health services research and policy community goes beyond calling out this broken trust. We must advance the conversation based on the evidence, to support action both nationally and locally to build trust, and to identify and evaluate what actions work best.
We also must question how our community has perpetuated and indeed strengthened structures and systems that reinforce racism—and whether the research questions we ask adequately focus on issues of racial justice. To quote Karbeah and Hardeman, “Our long-health belief systems drive the research questions we ask, the methods we employ, and the interpretation of our research findings.” AcademyHealth has committed to model, lead, and influence efforts to accelerate systemic change. We are working with an External Advisory Group to challenge us and develop a plan that is transparent, accountable, and adaptable. One of the primary ways we do this is through our conference offerings. Issues of health inequity, implicit and explicit bias, and racism in health data and health policy will feature on the main stage and concurrent sessions of this year’s co-located Health Datapalooza and National Health Policy Conference. We have been intentional in selecting speakers whose perspectives thoughtfully challenge our status quo and calling for submissions on these topics. Engaging in robust, and at times uncomfortable, conversations on equity and trust with our diverse attendees is an important step as we move forward together.
Embrace Innovation To Advance Trust In Science
The emergence of “fake news” and the growing misinformation in our public square has taken a toll on the trust we collectively hold not only in scientific institutions but in science itself. Misinformation has long been an issue, but in times of anxiety and uncertainty – hallmarks of this global pandemic – it has exploded. Allport and Postman’s “basic law of rumor” underscores the tendency of individuals to believe what conforms to internal belief structures and brings certainty or comfort when they feel unable to control their environment. Understanding these forces will be critical in the months ahead.
Unfortunately, health care is not the only sector plagued by misinformation and science denialism. Climate scientists have long been battling these issues. While the adverse impacts of climate change on human health are diverse and pronounced, we as a health care and research community are only beginning to grapple with it. Dr. Francesca Dominici, co-director of the Harvard Data Science Initiative, leads several interdisciplinary groups of scientists on issues of environmental health science and climate change. We’re looking forward to learning from her experiences around climate change at next week’s conference.
Despite the growth of COVID-19 misinformation, fundamental shifts in our scientific ecosystem have also occurred paving the way for a new model of evidence creation and translation. Trust in science grows when it is timely and relevant. The scientific community has responded to the COVID-pandemic with agility, shattering many norms through transparency, rapid sharing of discoveries, and global collaboration (and of course public funding). Scientific journals made all COVID-19 related articles freely available to the public and the move toward open access in the physical sciences finally took hold in the biomedical sciences with the unprecedented growth of medRxiv. These steps begin to democratize evidence so that all may examine, debate, and improve the research and, ultimately, strengthen public trust in science. Many may cite the attendant risks of open science and its tools and we must consider these. But to continue to grasp at outdated models of information power and privilege – and their lucrative business models – will only hamper our efforts to build trust.
Information power is not the only type of power yielded in research and AcademyHealth’s Paradigm Project is tackling the current structures, systems, and processes that limit the impact and value of health services research. Using the tools of human-centered design, we’re working on transforming the most foundational aspects of the field from peer review and structural bias in data and methods to better connections between health systems and community-based groups, flipping the locus of control from traditional researcher partners to the communities they seek to serve, and fully embracing a pre-print approach. We’re looking forward to hearing from Dr. Marcella Nunez-Smith, Yale professor and recently named lead of the Biden health equity task force, as she discusses COVID, social change and innovation in her keynote address as well as an expert conversation on the many facets of trust in science.
Think Big To Restore Trust In The Health Care System
Given many individuals’ and communities’ experiences with health care and the stark reality of deep disparities, mistrust is in the health care system is real and legitimate. Sadly, breaches of trust are a frequent occurrence today and have occurred throughout health care’s history from patient safety failures and medical errors to other health crises like rising maternal mortality among Black women and the over-prescription of opioids. These breaches have been compounded by perceptions of conflicted interests and persistent concerns that profit motives override patient care considerations. There is extensive documentation of unequal treatment and negligible progress at scale despite many shining community and system examples.
These historical and ongoing factors have been exacerbated by the pandemic as the health system is pushed to and in many cases beyond its limits, worsening existing disparities and eroding our trust in the system’s actual capacity. As we debate, develop and test strategies to build trust in health care, we must be bold. We must also develop solutions for a very different health care system in the future. For example, it can be especially challenging to rebuild trust in a virtual environment, yet telehealth is likely to remain a much larger component of the future care delivery system as a number of sessions at next week’s conference will discuss.
Compounding the erosion of trust between communities and the health care organizations that serve them, the pandemic has exacerbated the growing frustration and burnout amongst health care workers as their very lives have been put at risk in the last year. Most recently, we have seen health care workers who have been offered the vaccine have chosen not to get vaccinated. Indeed, a recent survey by the Kaiser Family Foundation found that only 29 percent of health care workers said that “they probably or definitely would not get vaccinated, similar to the share among adults overall (27%)”. Yet, as usual in health care, this average masks important differences as data also shows variation in vaccine hesitancy across demographic groups.
Finally, the health care system must also confront the ongoing danger of data breaches and lack of transparency in the use of patient data. While new federal rules will require more seamless patient access to digital data, there are unique cybersecurity risks associated with automating patient access to data, including the impact on privacy and the clinician-patient relationship. Experts in data privacy and patient advocates at next week’s conference will suggest strategies for leveraging patient data access to enhance trust and improve connections and communication between clinicians and patients.
Even as the health system continues to battle against the COVID-19 pandemic, it must also be looking ahead to the next pandemic. We must think big and set our sights on transformation. The pandemic has shown us that bold moves are possible. Entire health systems moved to telehealth in a matter of weeks as state and federal policies shifted. Transitions of this speed were inconceivable pre-pandemic. What else is possible that was previously impossible? Health system leaders from across the country will take to the main stage next week to discuss.
The Obligations Of Leadership To Focus On Trust
The most significant opportunity to enhance trust may lie in the work of leaders within health care organizations of all kinds. Trust has not historically been a measure by which organizations and researchers have measured the impact of their work, however. Ours is an industry that is dominated by for-profits accountable to shareholders and not-for-profits often operating as if they were for-profit organizations. These organization’s boards often fail to evaluate positions, decisions, transactions, and investments through the lens of whether their approach builds or destroys trust. Adding a “trust impact assessment” to decision-making could provide a needed added sanity-check to organizations as they make decisions about a variety of relevant activities – decisions ranging, for example, from how to market a product or whether to raise insurance premiums. Such assessments are no panacea, but they could give added voice and resonance to the concerns of patients and other key constituents.
An important role for health services researchers may be to build an explicit new body of research that assesses and measures changes in health care through the lens of trust. We believe that, were such measurements more commonplace, organizations and leaders would be more careful in their decision-making.
Join The Conversation
In addition to these issues of equity, science innovation, and health systems improvement Health Datapalooza and the National Health Policy Conference will touch on many other core health policy issues including the future of Medicaid and the Affordable Care Act. We hope you’ll join us Feb. 16-18 and add your voice and perspective to the conversation. Progress will not be easy and as if oft said “change happens at the speed of trust” – so join us in building trust and making lasting progress toward improved health and health care for all.
