Understanding Community Considerations, Opinions, Values, Impacts, and Decisions for COVID-19

Background:

COVID-19 has led to significant disruptions to usual operations of the health care system and
routines of millions of people. Regular medical appointments have been preempted or converted
to telemedicine, dietary changes have occurred due to food supply chain strain, and exercise
regimens altered by physical distancing policies, all of which may affect preventive care and
chronic illness management. Additionally, anxiety about risk of developing COVID-19 and the
availability of health care resources may alter care-seeking behaviors even for serious
conditions, e.g., heart attacks.

Understanding personal health and protective behaviors under threat of COVID-19 is an
epidemiologic imperative and can inform immediate public health response as well as planning
for population health needs post-crisis.

Critical care capacity during COVID-19 is also a matter of extreme concern. Limitations in
capacity, particularly mechanical ventilators have necessitated scarce resource allocation
(SRA) policies, which outline triage protocols while observing ethical principles of
distributive justice, transparency, and equitability.

In practice, these policies determine which patients are most likely to benefit from
intensive care, and some patients with a significantly heightened risk for mortality are less
likely to be prioritized in critical care allocation decisions. The uncertainty around
prioritization and threat of rationing of care has generated public attention and anxiety
evident in medical journals, news outlets, and on social media.

The rapidity of this crisis has compelled rapid development and/or modification of SRA
policies without the rigorous stakeholder engagement or evaluations of acceptance of these
policies by both laypersons and practitioners tasked with implementing such policies. Two
states (CA & NY), among the most affected by COVID-19, have recently developed new SRA
policies, creating a unique opportunity to evaluate how these policies are understood and
perceived by the patients most likely to be impacted by them and the practitioners who will
implement them. Moreover, given the complexity of the ethical underpinnings and potential
misinformation about SRA policies, there is a clear need to determine if a brief educational
intervention can influence perception and knowledge about these containment and management
policies.

The investigators propose to undertake rapid recruitment of a national cohort of individuals
and health care workers to understand knowledge and perceptions of public health and clinical
efforts during this evolving pandemic; and to implement a randomized controlled trial within
this cohort to test the ability of a brief intervention to improve knowledge and perceptions
about the health care system's capacity to provide equitable care during a pandemic. The
specific aims are to:

- Aim 1: Determine how key indicators of population health (including health status,
health behaviors, and access to care) have changed during the COVID-19 outbreak in the
US.

- Aim 1a: Uncover the extent of racial/ethnic and socioeconomic disparities in the impacts
of COVID-19 on health, health behaviors, and access to care.

- Aim 2: Assess the public's and practitioners' knowledge and values around SRA policies
and examine which individual characteristics correlate with these knowledge and values.

- Aim 3: Evaluate the impact of a brief educational intervention on knowledge and values
for SRA policy among the public and health care workers.

Population & Recruitment:

For Aim 1, the investigators will employ national outreach strategies via social media and
partnerships with national organizations to recruit a sample of adults (ages 18 and older)
from the general population. The investigators will enrich this sample by direct recruitment
efforts (via online health portal invitation) of over 300,000 patients in the Southern
California Area who are cared for in the University of California at Los Angeles Health
System (UCLA Health).

For Aim 2, the investigators will employ similar national outreach strategies involving
professional language targeted posts on social media sites (e.g., Doximity, LinkedIn) to
recruit a sample of health care providers. Additionally, this cohort will be enriched by
direct recruitment efforts of health workers employed by UCLA. Cohort participants in Aims 1
& 2 from California and New York (residence determined based on ZIP code) will be randomized
for Aim 3 to receive either a brief educational video or no intervention. All participants
(Aims 1-3) will be invited to complete three surveys (baseline, one-month post-intervention
follow-up, and four-month follow-up; Figure 1). Sample recruitment path and
representativeness with be assessed using unique source links and standard visitor tracking
analytics built into the study website.

Survey Assessments: Participants will first be presented with an online consent form that
includes language typical of a written consent and upon affirming consent will be directed to
complete the baseline survey. The patient baseline survey will collect sociodemographic
information (including ZIP code), chronic conditions and current health status, health
behaviors, anxiety and stress levels, changes to health and care seeking behaviors (e.g.,
social distancing, medication adherence, care-seeking behaviors), and will include series of
questions assessing perceptions and attitudes and knowledge about SRA policies and how they
are implemented (e.g., values about how decisions are made, understanding of prioritization
versus exclusion from critical care). Demographic, behavioral, and access questions are
largely derived from the validated Behavioral Risk Factor Surveillance System questionnaires
which will provide a historical comparison for study results. For providers, additional
questions about the characteristics of the provider will include specialty, years of
practice, and trainee status. Follow-up surveys will re-administer key baseline questions on
SRA knowledge and values, personal health behaviors, and COVID-19-specific impacts (e.g., if
they or a loved one was hospitalized and/or was subject to an SRA policy decision, and for
providers, whether they had to use an SRA tool during their practice); follow-up surveys will
additional ascertain exposure to media coverage about COVID-19 and SRAs in the intervening
windows. All surveys will be administered via Research Electronic Data Capture (REDCap)
system and links to complete follow-up surveys will be automatically delivered to
participants via e-mail, with up to four reminders to complete, facilitating linkage between
survey administration within individuals. E-mails will be stored separately from survey data
in REDCap and will be permanently deleted upon study completion.

Intervention and Randomization: The investigators will develop a brief (~3 min) video
intervention that describes what SRA policies are, how they were developed, who is most
likely to be impacted, and patients' rights under these policies. Two versions will be
utilized, one oriented for a lay audience and one for practitioners using technical medical
language, but both will be relevant to the policies currently in place in two of the hardest
hit states (NY and CA). The investigators have contracted with WorldWise Productions, who
have completed similar videos for multiple other UCLA Health and DGSOM projects. The
intervention will be hosted on a private YouTube channel and embedded in REDCap so that it
can be automatically delivered as part of the survey. The investigators will execute a
stratified randomization scheme based on state, age, and education level to allocate
respondents from CA and NY evenly between intervention and control. Participants outside CA &
NY will serve as negative controls. All participants will receive a post-intervention survey
with repeat assessment (as described above).

Focus Groups:

Because COVID-19 is a rapidly evolving crisis and there are no pre-existing validated
questions to ascertain COVID-19 perceptions and impacts, the investigators plan to conduct a
final qualitative follow-up (post-crisis) with a geographically and sociodemographically
diverse selection of participants (both patients and providers) in order to obtain a more
nuanced and complete examination of perceptions, attitudes, and experiences. Participants
selected will be invited to participate approximately 4-6 months later (after the COVID-19
crisis has slowed). Key health behavior themes will include experience with telemedicine,
disruptions to health care access, and general changes to health during and after COVID-19
pandemic; particular attention will be paid to inequities in these outcomes. Key SRA themes
will include the method of selecting patients, concerns about equity, special considerations
for disadvantaged or vulnerable populations, and perceptions of the crisis response in
general. Groups will be conducted via web-conference using Zoom and recorded, transcribed,
and then qualitative methods used to analyze transcripts for key themes. The investigators
plan to conduct approximately 15 focus groups of 5-10 participants each.

Power:

To detect a ½ standard deviation change in the number of correct knowledge items between the
intervention and control arms with 90% power and a two-sided α=0.05, 172 total participants
are needed to complete follow-up. Based on prior work with >80% trial retention and
recruitment of 55 participants per day, the investigators anticipate recruiting the necessary
216 baseline trial participants within 4 days. The investigators anticipate that they will
substantially exceed the targets to achieve desired trial power.

Milestones & Actionable Outcomes:

There is a paucity of evidence on changes in health status and behaviors related to physical
distancing policies and the widescale adoption and implementation of SRA policies. By
determining how health behaviors and access to care are impacted at baseline, the
investigators can directly issue recommendations for patients and providers aimed at
affecting population health and mitigating disparities therein. The assessment of SRA
policies and how they are perceived and implemented during a crisis will dramatically
increase the ability to design and apply such policies in a fair and equitable way and to
determine what adjustments to the policies from a clinical perspective are needed to ensure
that disproportionate burden is not borne by vulnerable patients. As the baseline survey has
already been developed, piloted, and programmed into REDCap and the investigators have
established partnerships with several organizations who have already agreed to assist with
study recruitment - the investigators are prepared to initiate the study immediately.
Production on the intervention video can begin as soon as notice of funds have been received.
Trial milestones include recruitment of >216 participants from CA & NY within the first week
of recruitment and retention of >172 participants at one-month follow-up. Additional
milestones include the submission of several research papers to high-impact medical journals
detailing research findings.