The National Health Council’s (NHC’s) Science of Patient Engagement Symposium was held virtually October 13-14, 2021. This year’s Symposium brought together more than 120 leaders from patient advocacy, non-profit, industry, and academia to discuss strategies for rebuilding trust in public institutions and scientific research. Throughout the Symposium, key themes emerged. Improving trust among our diverse population, especially those who are underrepresented, is not just appropriate, it is crucial. Other key takeaways included:

• The ways in which people receive information has changed dramatically in recent years. People rely less on traditional forms of information and instead find forums or communities that reinforce beliefs, even if those beliefs are not backed by evidence.
• Many individuals and communities are not feeling heard. We need to diversify more, and to find community champions who can better relate to local audiences.
• Public health institutions need to be more transparent. In the research community, we’re used to opposing outcomes, and for science to evolve as new information becomes available. The general public is not used to this. If we change recommendations, or if the science changes (for example, when mask mandates changed, or when new data about potential side effects of certain vaccines became available), we need to be transparent, provide context and be measured in our explanations. At the same time, the media often portrays science as much more certain than it is.
• Building trust takes time. Health care professionals are still the most trusted group for health information, but overall trust is eroding.
• Everything is local. People trust their own health professional (more so than “health professionals” overall), and CEOs/leadership of their company (vs. businesses in general). Trust in large-scale organizations such as the CDC, media, etc. is falling precipitously.
• Working with the community and making them active partners in efforts is a great way to build trust. Ways to do this include having community members as trusted allies, meeting people where they are, and amplifying credible voices.

Following is a summary of each session.

DAY 1

SESSIONS

Symposium Co-Chair Opening Remarks

• Barry Linden, JD, Vice President of Patient Engagement, Edwards Lifesciences, LLC
• Jessica Kennedy, Chief of Staff, Mental Health America

The 2021 Science of Patient Engagement Symposium started with the two co-chairs welcoming attendees, recognizing the event planners, and thanking event sponsors.

Opening Remarks: Building Trust in Patient-Led Research

• Hannah Davis, Co-founder, Patient-Led Research Collaborative

Ms. Davis, a Long COVID patient and data scientist, opened the Symposium by describing the story behind and impact to date of the Patient-Led Research Collaborative (PLRC). She explained how there were misperceptions in the early days of COVID-19 about the duration and symptoms of COVID-19, and virtually no discussion about post-viral issues. Individuals experiencing symptoms were urgently looking for information and came together to contribute and analyze data.

In April 2020, the PLRC published the first research on Long COVID, identifying multi-systemic symptoms, issues with testing and testing accessibility, stigma, and neurological symptoms. Their work has informed understanding of Long COVID around the world, including:

• The COVID-19 symptom list is much longer than initial CDC list
  • Fatigue, post-exertional malaise, brain fog/cognitive dysfunction were more common than the CDC listed symptoms
• Not all Long COVID patients were hospitalized (most weren’t!)
• Neurological symptoms, particularly cognitive dysfunction (“brain fog”) and sensorimotor symptoms (dizziness, paresthesias, tremors) are common
  • Not just a respiratory illness
• Negative tests don’t mean patients didn’t have COVID-19

Her recommendations for instituting patient-led research were to avoid tokenization (that is, using patient information/data as transactional) and to do more to involve the patients with scientists in data collection or processing (e.g., crowdsourcing).

 Keynote Remarks

 Introduction by Oved Amitay, PhD, MSc, President and CEO, Solve ME/CFS Initiative

• John J. Whyte, MD, MPH, Chief Medical Officer, WebMD

Dr. Whyte’s presentation described the erosion of trust among communities in America, and what we can do to build and restore trust. While trust in health care practitioners was high at the beginning of the COVID-19 pandemic, over time the discussions around COVID-19 became political and eroded public trust. The best ways to restore trust are to focus on health literacy, improve patient communications, and do a better job engaging with patients at the local level. This includes having more empathy, listening more, and involving patients in shared decision-making. He also noted that trust takes time and that transparency in communications is hugely important. He reminded attendees that the scientific community is used to hypotheses being challenged and recommendations changing due to new learnings, but the public is not; and that such changes in policy and practices can change perceptions of the trustworthiness of science.

Amplifying Trusted Voices on Social Media

Moderator: Bianca B. Ruzicka, PhD, Executive Director Medical Affairs, Head USMA Hematology and Oncology, Gilead Sciences, Inc.

• Brittany Abdool, Vice President, Social & Digital Media, Social Driver
• Gary Puckrein, PhD, President and CEO, National Minority Quality Forum

The common theme from Dr. Puckrein and Ms. Abdool’s session was to know your audience and to find the trusted voices for your audience from which people will accept information. Ms. Abdool explained that a sound social strategy should include:

• Attention (something that grabs people’s attention);
• Intention (targeting people who are already on a mission to receive your information – search engine optimization and online ads help with this); and
• Mention (getting people to talk about your message).

To ensure you are reaching your target audience, considerations when conducting a social media campaign include your target audience’s access to high-speed internet connection. In cases where access isn’t great, videos are not an effective communications strategy; text messaging is better. Other advice includes segmenting your message – not to make it too broad. Dr. Puckrein also suggested countering mis- and disinformation by finding those who are neutral or have positive feelings about the information you are trying to disseminate. Dr. Puckrein introduced and invited patient advocacy organizations and other to contribute to an initiative of the National Minority Quality Forum: AI HealthNet, a bridge between the trusted voices of black, indigenous and people of color (BIPOC) serving community-based organizations and federally qualified health clinics on one side, and healthcare content providers on the other. 

Accelerating Trust in Clinical Research: Turning Experiences into Action

Moderator: Jill Yersak, PhD, Vice President, Mission Strategy, The ALS Association 

• Sarah White, MPH, Executive Director, Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard
• Tesheia Harris, MBA, MHS, Deputy Director and Chief Operating Officer, Yale Center for Clinical Investigation (YCCI), & Director, Clinical Research, Yale School of Medicine
• Venus Ginés, MA, P/CHWI, President & Founder, Día de la Mujer Latina® Inc

Lack of trust is a major barrier in clinical research participation. In order to understand how different people respond to a different treatments, it is imperative to have a diverse group of individuals participating in the entire research process. Their absence may result in skepticism. In August 2020, the Multi-Regional Clinical Trials (MRCT) Center released its Achieving Diversity, Inclusion, Equity In Clinical Research Guidance and Toolkit.  

Ms. White discussed how patient engagement can lead to willingness and trust in clinical research, but trust must be built first and continuously throughout the research process. Trust comes from learning about meaningful questions that come out of learning about the community; listening to those important questions and incorporating them into study design; and using clear and simple materials to nurture the scientist/participant relationship. Ms. White demonstrated that trust comes first, and that building trust happens across different stages of research. It is imperative to meet communities where they are; understand the community; and have meaningful engagement. Perhaps most importantly, it is advantageous to be self-aware. We all need to be aware of our own potential self-bias and ensure ourselves and study teams are culturally competent.

Ms. Tesheia Harris, with the Cultural Ambassadors program, and Ms. Venus Ginés, with Dia de la Mujer training program for community workers and promotores (Spanish for community health workers), shared success stories and challenges. They shared how to best educate participants and their families; best practices for training; and how to design better studies for better participation. Going into communities as one starts to think about the study design and understanding what the community needs will assist researchers in retention. Similarly, if researchers find ways to address social determinants of health the study protocols will set the stage for success. Other recommendations include setting short term measures of success, finding the small wins, and not letting perfect be the enemy of good.

Day 1 Breakout Discussions

• Exploring the National Health Council’s Patient Engagement Fair-Market Value Calculator Toolbox
  • Eleanor Perfetto, PhD, MS, Executive Vice President, Strategic Initiatives, National Health Council
• No One Size Fits All: A Discussion About How to Achieve a Balanced, Evidence-Based Approach to Telehealth and In-Person Care
  • Todd Bledsoe, Executive Director, Patient Engagement and Advocacy, Neurocrine Biosciences Inc.
  • Kendra, Martello, JD, Executive Director, Public Policy, Neurocrine Biosciences Inc.

In breakout groups, participants explored the NHC’s Fair-Market Value (FMV) Calculator and how to provide a fair-market rate for patient and patient advocacy groups involved in patient engagement activities. Groups discussed how the FMV calculator relates to trust in and trustworthiness of science and speculated on how it may evolve based on how the calculator continues to be used. In a concurrent session, participants discussed how the COVID-19 pandemic forced us to adopt new ways of doing many things, including, importantly, seeking and providing health care. It featured a lively group discussion about how the healthcare community can collaborate to ensure telehealth evolves to meet individuals’ needs and deliver the highest quality, evidence-based care.

Tackling the Infodemic: Our Mission-Essential Role in Overcoming Falsehood and Building Trust

Introduction: Jason Kim, PhD, MS, Vice President of Osteoarthritis Research, Arthritis Foundation

• Lynn Hanessian, Chief Strategist, Edelman’s US Health Team

Ms. Hanessian presented data which found that only 22% of those surveyed had good information hygiene and that we all operate on our own information bubbles. Mis/disinformation threatens the people we serve, and data shows that Americans have difficulty making decisions about credible information. Trust in institutions such as business, government, NGOs, and the media has decreased dramatically. The best way to build trust is to microtarget communities and to have regular, ongoing communications with them. By identifying shared priorities, activating influence across our communities, and redoubling our roles as sources of truthful, authentic information, we can help fill the void caused by growing mistrust of scientific information.

The breakout sessions that followed had participants answer the questions:

1. How do you keep the pulse on your communities?
2. How do we come up with a model that ensures interaction, engagement and brand preference across the diverse and polarized communities you serve?
3. Who are your champions and ambassadors for your community? Who are the influencers and how do you identify them?

Participants discussed how organizations needs to be nimble enough to pivot when necessary. For example, when emails have a low open-rate or Zoom meetings are experiencing low participation, pivot to podcasts or town hall-type forums. Ensuring diversity within teams and promotional materials can also be helpful. Ms. Hanessian finished out the session by highlighting the need to restore trust for the post-pandemic recovery plan through the following ways:

• Recognize that Americans continue to fear for their safety and are not ready to return to normal;
• Embrace bipartisan trust of one’s employer to build confidence in the vaccine across communities;
• Communicate trustworthy information weekly or more often;
• Give employees a voice in reimagining the workplace; and
• Partner with government and other institutions to provide equitable and effective solutions.

DAY 2

SESSIONS

Opening Remarks: Fifty Years of Building Community Trust

• Barbarajean (Bj) Robinson-Shaneman, Senior Program Specialist, PATIENTS Program, Department of Pharmaceutical Health Services Research (PHSR), University of Maryland, Baltimore

Ms. Robinson-Shaneman inspired participants by sharing her experiences building community trust in West Baltimore. She suggested researchers must “Let love and healing guide your way to building trust in the community.” Through a series of photographs and personal stories, she brought to life what “building trust” really looks like. She suggested that grant writers, principle investigators, and data analysts not only learn about community engagement, but get to know individuals by participating in community events. It is essential that researchers truly listen to the needs of the community and work to address those needs, not perceived needs.

Fireside Chat: The Role of Media in Promoting Trust in Science

Moderator: Randall Rutta, Chief Executive Officer, National Health Council

• Ed Silverman, Senior Writer and Pharmalot Columnist, STAT News

Mr. Silverman and Mr. Rutta had a lively discussion on the role of the media and its intersection with trust in public health and science. In this ever-changing and information-packed environment, media has been forced to get more sophisticated to reach their intended audience, while at the same time trying to stay scientifically accurate and determine what is indeed newsworthy. The speed at which information is updated and distributed makes it hard to know what is real/true and what isn’t. The media’s job is to relay, interpret, and analyze key takeaways quickly from evolving sources of information. Mr. Silverman suggested that to work best with the media in general and social media, organizations need to:

• Provide regular updates to their media contacts (including letting journalists know what your organizations are currently doing);
• What your key issues are; and
• Who the right people at your organization to talk to are

Day 2 Breakout Discussions

Using Data to Drive Trust and Equity: Input Into the NHC’s Equity Initiative

• Jennifer Dexter, Director, Policy, National Health Council

Building Trust in Science Through Community Engagement

• Christina Chan, MD, Executive Director, HIV, Patient Innovation and Engagement, Office of the Chief Patient Officer, Merck
• Susan Manoff, MD, MPH, Executive Director, Infectious Diseases and Vaccines, Patient Innovation and Engagement, Office of the Chief Patient Officer, Merck

In the two breakout sessions, participants were asked about what we can do to promote equity and how to partner/collaborate with organizations and biomedical/health research. Key themes discussed in both groups included ensuring that diversity is reflected in clinical trials, that data needs to be used to tell the story (and that translating data and research to policy is challenging), and that context is key. It’s also important to have peer-to-peer community navigators or someone with a shared experience to help.

Accelerating Trust in Public Institutions

Moderator: Raj Sabharwal, MPH, Senior Director, Strategic Alliances, AcademyHealth

• Carolyn Miller, Senior Program Officer, Robert Wood Johnson Foundation
• Joe Mariani, Senior Research Manager, Deloitte Services LP’s Center for Government Insights
• Alma McCormick, MA, Member and Patient Advocate, Crow Nation; Executive Director, Messengers for Health

 Ms. Miller kicked-off this panel by presenting data from a RWJF/Harvard/NPR poll on the Public’s Perspective on the United States Public Health System fielded in late winter 2021. The poll found that there is a lot of public support for increased spending on public health and that trust is highest among nurses, doctors, and healthcare workers individuals know. Public trust in public institutions, such as the Food and Drug Administration and Department of Health and Human Services, is lower.

Next, Mr. Mariani, explained how trust is a relationship that is not strictly rational and is reinforced by contact. A person or institution’s intent and competence to do the right thing will help to build trustworthiness. To build trust you must enter conversations through networks (such as through citizens, employees, regulated organizations, NGO, and vendors) and with no agenda – just listen and be respectful.

Ms. McCormick, a member of the Crow Nation, and Executive Director at a community health organization spoke next about how to build trust at a personal level. She noted that her community has had some mistrust of public health institutions for decades, and community health workers like her have had to work diligently to overcome the loss of trust due to historical and current mistreatment. Ms. McCormick explained that trust comes from the heart and must have sincerity and integrity. In order to build back trust that has been lost researchers can meet people where they are or use tools like social media to find out more information about their needs.

Meeting People Where They Are: Creative Ways to Engage People to Build and Overcome Loss of Trust

Moderator: Tia Dole, PhD, Chief Clinical Operations Officer, The Trevor Project

• Chris Schueler, Producer/Director, Vaccination from the Misinformation Virus
• Shreya Kangovi, MD, MS, Associate Professor of Medicine, Perelman School of Medicine, University of Pennsylvania
• Barbarajean (Bj) Robinson-Shaneman, Senior Program Specialist, PATIENTS Program, Department of Pharmaceutical Health Services Research (PHSR), University of Maryland – Baltimore

Mr. Schueler presented information on how to reach unique audiences through video media. His work focuses on conveying complex topics simply, especially through video documentaries. His most recent documentary “Vaccination from the Misinformation Virus” explores the link between misinformation and vaccine hesitancy. He discussed strategies the healthcare community can use to build trust, including video clips.

Dr. Shreya Kangovi discussed the important role of community health workers in improving individual’s health outcomes, reducing hospital utilization, and improving quality of care. Dr. Kangovi shared a video of Ms. Ashlee Harris, a community health worker, describing how her work positively impacts people on an individual basis. Dr. Kangovi also shared suggestions for researchers to build trust, noting that researchers often put the burden on the “subject” of research, but instead the researcher must earn trust and the confidence of participants. One way to do this is to share power, and transfer power to the patient. The design, hiring, operations, governance, and evaluation of a study or organization all feed into the perception of trustworthiness.

Ms. Barbarajean (Bj) Robinson-Shaneman, who also spoke earlier during the Symposium’s program, expanded on how she connects with people to build trust. She tries to meet people wherever she goes such as at: community clinics, churches, health fairs, libraries, and other community-based activities. Ms. Robinson-Shaneman suggested that clinicians and researchers should listen more to patients and the community, turn to trusted sources with shared experiences, and be aware of their privilege and any past trauma they may have.

Co-Chair Closing Remarks

• Jessica Kennedy, Chief of Staff, Mental Health America
• Barry Linden, JD, Vice President of Patient Engagement, Edwards Lifesciences, LLC

In their brief remarks, Ms. Kennedy and Mr. Linden referred to a passage first uttered by Dr. Whyte of WebMD: “To be trusted is the greater compliment than to be loved.” They said that the challenge for participants is to be both trusted and loved.

Post-Meeting Debrief

• Discussion Leader: Stacie Bell, PhD, Chief Scientific and Medical Officer, National Psoriasis Foundation 

In this informal post-session gathering, participants and organizers were asked what next steps they would take as a result of the Symposium and what they might want to see in future programs. Most agreed that they plan to make a more concerted effort building trust and working with communities. There was also consensus about the need to further explore and learn about the role of community health care workers.