Engaging in Research and Disseminating Information Are Essential For All Stakeholders, Experts Say

As science and medicine continue to rapidly advance, effective communication is necessary for translating research findings into real improvements in patient care, explained panelists at a Center for Innovation & Value Research 2025 Methods Summit panel discussion held on March 19 in Washington, DC. In the session, which was entitled “Turning Data into Action: Communicating Research to Drive Healthcare Change,” the speakers highlighted effective ways to communicate research findings to diverse audiences while assessing the real-world impact of patient-centered research in the advancement of health care outcomes.¹

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Panelist Bridget Doherty, MPH, MS, director of access and policy research at Johnson & Johnson Innovative Medicine, began the discussion by emphasizing that the biggest challenges are often self-inflicted. Speaking as someone with a background in communications, she explained that while first in the research space, she found the information somewhat inaccessible. Simultaneously, she stressed that accessibility does not necessarily mean “dumbing down” information, and instead, accessibility involves explaining how findings are relevant for health care professionals, patients, policymakers, and others.¹

Additionally, professionals must understand the importance of engagement. Without engaging and communicating data and research correctly with others, dissemination is an “empty activity,” explained Doherty. Jessica Johnson, MPH, director of community research & engagement at the National Eczema Foundation, echoed this as well as described her own perspective as someone who specifically works in an engagement-based setting within the research space. By understanding how the research process works and how individuals can leverage their own voice and experience in the context of the research process can be valuable when deciding on data collection methods, which may then create dissemination strategies and promote updates within communities that need engaging information.¹

“In regard to knowledge, we have to just remember that knowledge on its own doesn't change health and doesn't change care, but when we pair knowledge with application and understanding, that's where we see progress, and we can move the needle,” she explained. “[To] add another perspective, for one of the biggest challenges I think that exists in our field is the power dynamics that naturally can exist between researchers and patients as we work to partner with patients in our research. And unfortunately, it's just some of that natural unconscious bias that creeps in sometimes…researchers [are] thinking that their professional expertise and the patient-lived experience aren't on the same level, and they don't value…the patient-lived experience the same way as their educational training or as our educational training.”¹

In addition, Johnson says that the National Eczema Association exemplifies this by publishing in peer-reviewed journals for researchers, providing lay summaries, infographics, and blog posts on their website for patients and caregivers, in addition to increasing podium presentations with patient voices and sharing information across all digital platforms, including community-based outreach to reach those without digital access. Through these methods, the organization is able to adequately engage the researchers and health care professionals while also meeting the needs of patients and their caregivers.¹

Alternatively, Kimberly Westrich, MA, chief strategy officer of the National Pharmaceutical Council, describes how her organization responded to concerns raised by patient groups regarding the negative impact of copay accumulators and maximizers on medication affordability and access. To address this, they developed a primer explaining the issue, published it in open access resources, and—at the time of the session—are planning a webinar in collaboration with patient groups. Through these methods as well as a sustained LinkedIn campaign to reach multiple stakeholders with tailored language and evergreen content, the organization is able to emphasize the importance of utilizing multiple communication channels—such as social media, webinars, written materials, and infographics—to effectively disseminate research findings in formats that are accessible to diverse audiences.¹

Crucially, Johnson stressed that dissemination must be considered at the initiation of research or studies that are conducted. Having these measures in place while frequently assessing what is working and what is not can bring success for all stakeholders.¹

“We need to start thinking about dissemination and even the evaluation piece from the beginning of our conversations about a research study, so being able to have in place measurements…what is the reach, what is the adoption, what is the awareness, and then, being able to get those results fairly quickly and have patients weigh in on why,” Johnson explained. “Maybe this dissemination strategy wasn’t effective, [and if so], what can we do differently in the future? Then, taking those results that you have and continuing those conversations forward, even after the research study because, of course, you found additional unmet needs as you are conducting your research. [Dissemination and engagement] should involve continuous feedback.”¹

Artificial intelligence (AI) models may also serve as resources to help make complex language more understandable for certain stakeholders. As an example, a patient may have difficulty understanding clinical research or information and AI can help simplify the language, allowing patients to feel more comfortable discussing research or their own health conditions with their health care professionals. Conversely, AI can allow health care professionals to simplify their language to speak effectively with their patients. In an earlier panel discussion, the experts highlighted the benefits while addressing potential drawbacks. Doherty echoed these sentiments.^1,2

“From what I've heard today, there's no excuse—if you're not a natural writer—to at least help yourself use more general language when you're talking to other audiences. The way I see it, AI gets you started on a different way of communicating and thinking,” explained Doherty. “Again, I wouldn't rely on [AI] 100%, but maybe, if you need help in that idea of, ‘How can I present this in a different manner?’ that could be a good tool as for the rest of it. I think those of us, especially in industry, are treading cautiously and with our partners who are real experts in the field before we move forward in [implementing AI] further.”¹

REFERENCES

1. Westrich K, Johnson J, Doherty B. Turning Data into Action: Communicating Research to Drive Healthcare Change. Presented at: Center for Innovation & Value Research 2025 Methods Summit; Washington, DC. March 19, 2025.

2. McGovern G. Leveraging AI Within Rare Disease Care While Maintaining Humanity. Pharmacy Times. May 12, 2025. Accessed May 13, 2025. https://www.pharmacytimes.com/view/leveraging-ai-within-rare-disease-care-while-maintaining-humanity