The PATIENTS Program Perspective

January 28, 2025

Issue 4; January 2025

P.A.R.T.N.E.R. with the Community to Communicate about Research

By Michelle Medeiros, MS, MA, CCRP, Administrator Business Operations/Director of Research, The PATIENTS Program

As many continue to recover from the tsunami of misinformation that stemmed from the COVID-19 pandemic, and we are potentially faced with a new whirlwind of misinformation, weary science communicators must continue to show up and serve as trusted sources of information. That being said, we can’t possibly do it alone! Research institutions, public and private, must serve in this role and can do so with intentional investment. If these “organizations” prioritize participants in the lifecycle of research advancement, they can serve as the conduit to information that facilitates inclusive, ethical, and compliant research conduct. This adeptly positions the organizations to address some of the most challenging concerns in research today, for example, the effective inclusion of underrepresented communities in research. In this context, “communities” are defined in the broad sense as individuals who are underrepresented in research based on categories such as race, ethnicity, disability, gender, gender identity, socioeconomic status, geographical location, veteran status, and mental health status. The organizations are also poised to address growing concerns in research, such as the role Artificial Intelligence (AI) will play. The organizations can demonstrate their commitment to transparent communication by serving as a P.A.R.T.N.E.R. with the community to co-develop solutions as follows:

• Passionate advocate for advancing the protection of human subjects. For example, in conversations with community members from underserved communities, both urban and rural, about how research is conducted today versus the missteps of the past, many were encouraged to hear that there are oversight bodies that protect their rights and well-being.
• Awareness of the organization and its role in ethical research conduct on a broader, grassroots level. Community members have expressed an interest in learning more about research organizations. An effective method to spread awareness is to identify trusted messengers in the community and work with them to develop relatable information to increase the community's awareness.
• Resource for research participant education, questions, and concerns. Organizations have a plethora of existing information that can be leveraged. Being present in a “boots on the ground" way facilitates more effective dissemination of information to underrepresented communities. Communities access information in different ways, so this can be done both virtually and in person.
• Transparent organization that is free from influence. Whenever possible, clearly demonstrate how the organization is an independent entity regardless of funding or other external factors.
• Navigate neutral territory as both communities and researchers attempt to traverse the world of AI. AI has the potential to offer significant advancement in human research and researchers are exploring the medical mysteries AI can unlock. That being said, AI is not without its pitfalls and unknowns. For example, many assert that AI has inherent biases against communities of color and other underrepresented communities. Additionally, given lived experiences, it is difficult for some community members to trust in-person researchers, asking them to engage with AI bots or other automated mechanisms will take significant trust-building exercises.
• Empathetic approach to the lived experiences of communities. Each community has a different historical and contemporary relationship with research. Authentically acknowledging these differences is critical to understanding the barriers to research participation and co-developing methods for overcoming them.
• Reliable source of information as communities continue to recover from the COVID-19 pandemic and public health professionals make a concerted effort to be more equitably prepared for the next public health event. Many underrepresented community members talk about how they did not know where to go for trusted information and how to navigate misinformation. Fortifying the organization’s role as a reliable source of information establishes a foundation for future communication.

PATIENTS Program's Growing National Impact

By C. Daniel Mullins, PhD, Executive Director, The PATIENTS Program and Professor at the University of Maryland Baltimore

The PATIENTS Program wants to connect with you and other leaders in these communities:

? Black/African-American

? Cancer

? Cardiovascular Disease

? Community Clinics, Health Systems, Hospitals

? Disability

? Mental Health

? Older Adults/Seniors

? Reproductive Healthcare

???????????????? ???????????? inspire how we do patient-centered research!

???????????????? ?????????? ???????????????? ???????????????????? ? means more voices from the above communities

How did we choose these communities?

? Alignment with the PATIENTS Program’s strategic plan

? Representation of underrepresented?populations

? Involvement in health equity research

? Reach and size of community

? Likely impact on advancing health equity

?? The prioritization was guided by The PATIENTS Program Steering Committee Leadership

?? How YOU can get involved….

? Are you a leader from one of these communities?

? Do you know someone who represents them?

We want to hear from you….

→ Let’s work together to improve health outcomes for all Americans.

Join our national effort and help transform research one community at a time.

************************

?? A huge thank you to our financial sponsors Novo Nordisk Bayer AstraZeneca

#HealthEquity #CommunityEngagement #PatientsVoices

Podcast Episode: Sharing the Recipe of Research

The PATIENTS Program has perfected the recipe for engaging communities in impactful, patient-centered research. Now, with the PATIENTS Going National Initiative, we're taking our success to communities across the country. On our first podcast episode of 2025, the PATIENTS Program's Executive Director C. Daniel Mullins talks about our proven approach and vision for national replication.

"Ever since I mentioned The PATIENTS Program's recipe, I've gotten lots of questions," says Mullins. In the episode, he talks about the PATIENTS Going National initiative, his "recipe" for success, and the communities involved.

In reviewing all the PATIENTS Program has accomplished in the past thirteen years, towards the end of the episode Daniel is asked, "What would you tell your younger self?"

Hear Daniel's answer and more by clicking on the podcast links below.

To watch the full episode on our YouTube channel: https://lnkd.in/eQ5gx8Sq

To listen to the full episode: https://creators.spotify.com/pod/show/the-patients-program/episodes/Sharing-the-Recipe-of-Research-e2t14r8

#research #community #patientcentered