VOICE

When Patient Stories Help, and When They Do Not

By Lisa Fullam, Strategic Advisor, Health Communications & Medical Marketing, On-Point Marketing & Communications

Headshot, Lisa F, communications consultantPersonal stories have become a vital part of modern health communication. Patient advocacy organizations, public health campaigns, and research initiatives frequently invite individuals to share their experiences with illness, diagnosis, treatment, and recovery.¹

These stories matter. They bring humanity to complex medical topics, help others recognize symptoms, and translate clinical language into experiences people can understand in their own lives. Simply put, storytelling helps medical information travel farther and reach people in ways statistics alone rarely can.

Over the years, I have had the privilege of working with a wide range of patients and families who have chosen to share their stories. Some were teenagers navigating their first serious health challenge, including young people newly diagnosed with conditions such as diabetes. Others were parents learning that a newborn had a rare disorder like hemophilia. Some were families coping with chronic illnesses such as heart or liver disease, while others were grieving the loss of a loved one to a sudden medical event like a blood clot. I have also worked with individuals whose public profiles meant their stories reached audiences around the world, including well-known figures who chose to speak openly about conditions such as HIV/AIDS.

Despite these differences, one thing comes up again and again when stories are shared publicly: People often respond, “I thought I was the only one.”

That moment of recognition is powerful. For many individuals dealing with a serious health event, hearing someone else describe a similar experience can lift a sense of isolation that may have lingered for months or years. Stories remind people that they are not alone. As a result, patient storytelling has become an influential tool in health education and advocacy.

Yet as storytelling becomes more central to public health communication, researchers and health communicators are also asking an important question: When do patient stories improve understanding, and when might they fall short?

Understanding how narratives influence risk perception, health literacy, and medical decision-making has become an important area of research. Studies show that stories can shape how people interpret medical information and respond to health risks in ways that statistics alone often cannot.²

the word 'storytellling' superimposed over a woman typing on a laptopNarration in the Era of Public Health Campaigns

This question becomes especially important during public health campaigns such as Blood Clot Awareness Month.

Awareness campaigns play an essential role in highlighting conditions that might otherwise receive little public attention. At the same time, the growing number of organizations, campaigns, and digital platforms means audiences may encounter an enormous volume of information during these moments. Statistics, graphics, personal stories, expert commentary, and calls to action often appear together across multiple platforms. While the goal is to raise awareness, the sheer volume of messaging can sometimes lead to confusion or message fatigue.³

In this environment, how stories are presented becomes just as important as the stories themselves.

The Role of Narrative in Public Health

Public health education has traditionally relied on data, guidelines, and clinical explanations. These remain essential. However, decades of research in health communication demonstrate that narratives can play a crucial role in helping people engage with health information. Stories make risks feel real. When individuals hear experiences that resemble their own lives, they often pay closer attention and process information more deeply.⁴

In this way, storytelling can serve as a bridge between clinical knowledge and everyday understanding.

The Limits of Narration

At the same time, public health researchers caution that narratives alone do not automatically lead to better understanding.

Stories are inherently personal. They reflect individual experiences shaped by unique medical histories, circumstances, and interpretations. When shared without context, a compelling story can unintentionally oversimplify complex medical issues or leave audiences uncertain about how broadly the experience applies.⁵

Occasionally, stories may even distort risk perception when they are presented without supporting medical information.

Recognizing these limitations does not diminish the importance of lived experience. Rather, it highlights the value of pairing patient stories with clear, evidence-based education that helps audiences interpret what they hear.

When Stories Become Education

woman reading a tablet deviceWhen storytelling is approached thoughtfully, it can become one of the most effective tools in public health education.⁶ The stories that tend to resonate most strongly often share several characteristics:

  • They describe symptoms or warning signs that others can recognize.
  • They provide insight into risk factors or health history.
  • They acknowledge uncertainty and the decision-making process during illness.
  • They connect personal experience with credible medical information and resources.

Stories like these do more than inspire empathy. They help transform experience into knowledge.

For conditions such as blood clots, where symptoms may be unfamiliar or easy to dismiss, this kind of narrative education can help people recognize when something may be wrong.

During Blood Clot Awareness Month, the Rowan Foundation’s In Her Words campaign encourages women to share their experiences with blood clots, clotting disorders, and related women’s health issues. By pairing personal stories with educational resources, the initiative aims to help others recognize warning signs, understand potential risk factors, and feel more comfortable raising questions with healthcare providers.

Equally important, the campaign recognizes that sharing a story is a deeply personal decision. Many people need time to process what they have experienced before speaking publicly about it. When someone reaches a point where they feel ready to share their story, that act of generosity deserves respect and gratitude.

Listening as Well as Telling

Another lesson from health communication research is that storytelling must include listening.

For more than a decade, the Rowan Foundation has worked closely with patients, families, and caregivers navigating the intersection of women’s health and clotting. Their experiences often reveal patterns that statistics alone may not capture, including delays in diagnosis, confusion about symptoms, or barriers to accessing care.

The field of narrative medicine emphasizes the importance of listening carefully to patients’ experiences to improve healthcare communication and understanding.⁷

When these experiences are thoughtfully gathered and examined alongside clinical evidence, they can help guide more responsive and effective health education efforts.⁸

The Role of Skilled Health Communication

Transforming complex medical information into meaningful public education requires its own expertise.

Public health communication involves more than sharing information. It requires careful attention to how people interpret risk, how messages are framed, and how information is presented so that it informs rather than overwhelms.⁹

Just as we rely on trained clinicians for medical care or adept financial professionals for investment guidance, effective health education benefits from professionals trained in communication and public health messaging.

When skilled communication strategies are combined with patient voices and sound medical evidence, health campaigns can move beyond simple awareness and foster deeper understanding.

A More Thoughtful Role for Patient Voice

Patient storytelling will surely remain an essential part of public health communication in the digital age. The goal should not be to question whether stories belong in health education, but to ensure they are used in ways that respect the people sharing them and help others learn from them.

When used responsibly, patient stories can illuminate symptoms, clarify risk, and encourage meaningful healthcare conversations. They can also remind individuals navigating illness that others have faced similar challenges and emerged with insight and strength.

At their very best, these stories do more than inform. They build connection, understanding, and lasting community.

Submit your story to join the Rowan Foundation’s In Her Words storytelling initiative here.

Rowan Foundation press release, announcing launch of storytelling campaign prior to Blood Clot Awareness Month, February 19, 2026.

REFERENCES
  1. Bugshan, W. M., & Al Qahtani, S. J. (2022). Role of Health Awareness Campaigns in Improving Public Health: A Systematic Review: Life Sciences-Public Health. International Journal of Life Science and Pharma Research, 12(6).
  2. Green, M.C. (2006), Narratives and Cancer Communication. Journal of Communication, 56: S163-S183. https://doi.org/10.1111/j.1460-2466.2006.00288.xHinyard, L., & Kreuter, M. (2007). Using Narrative Communication as a Tool for Health Behavior Change. Health Education & Behavior.
  3. Purtle J, Roman LA. Health awareness days: sufficient evidence to support the craze? Am J Public Health. 2015 Jun;105(6):1061-5. doi: 10.2105/AJPH.2015.302621. Epub 2015 Apr 16. PMID: 25879148; PMCID: PMC4431079.
  4. Hinyard LJ, Kreuter MW. Using Narrative Communication as a Tool for Health Behavior Change: A Conceptual, Theoretical, and Empirical Overview. Health Education & Behavior. 2007;34(5):777-792.
  5. Dutta R. The limitations of narrative medicine. Theor Med Bioeth. 2025 Jun;46(3):247-264. Epub 2025 Apr 16. PMID: 40237881; PMCID: PMC12037677.
  6. McCall B, Shallcross L, Wilson M, Fuller C, Hayward A. Storytelling as a research tool and intervention around public health perceptions and behaviour: a protocol for a systematic narrative review. BMJ Open. 2019 Dec 3;9(12):e030597. PMID: 31796479; PMCID: PMC6924770.
  7. Charon, R. (2006). Narrative Medicine: Honoring the Stories of Illness. Oxford University Press.
  8. Y Coombs, N. M., Porter, J. E., & Barbagallo, M. (2023). An exploration of the influencing factors for effective public health messaging during disasters: A scoping review. Public Health, 228, 73–81.
  9. Karakolias S, Tagarakis G, Polyzos N. Communication skills as a bridge between medical and public health education: the case of Greek medical students. Front Public Health. 2025 Oct 9;13:1709045. PMID: 41142737; PMCID: PMC12546289.