By: Jessica Woodard, Allegiance Group
This guest post is contributed by Allegiance Group + Pursuant, which helps nonprofits deliver full-funnel marketing and fundraising strategies that move donors—and missions—forward.
Stories engage people, drive connections, and build trust—all of which are important factors in your healthcare organization’s success. Whether you are advocating new ways to close gaps in diabetes care or raising awareness for complex diabetes, compelling stories engage potential patients and supporters and illustrate the human impact of your work.
However, sharing these narratives is a delicate balancing act for healthcare organizations, since you need to comply with regulations like HIPAA, pursue your marketing goals, and maintain trust and transparency with patients and donors.
To ethically pursue your goals, healthcare organizations must adopt a storytelling framework that prioritizes the patient’s rights and agency. This guide explores how.
1. Obtain informed consent.
Ethical storytelling starts with transparency. While there are legal considerations to keep in mind, securing informed consent from patients is critical to building and preserving their trust in your organization. Your patients must fully understand where and how their story will be shared.
To give them the full picture, your organization should:
- Clarify the channel. Explicitly tell participants where their stories will appear, whether that’s a page on your website, a fundraising email, or a social media ad.
- Secure specific releases. Secure a signed release form to ensure you can ethically use participants’ testimonials in marketing and fundraising materials. Use either a specific testimonial release form or a broader media release form that covers photo, video, and audio.
- Update consent for new campaigns. If you plan to repurpose a story for a new initiative, be sure to reconfirm consent with the patient every time.
- Define the “Why.” Explain the goal you have for using the story so the participant feels like a true partner and not a prop. For instance, perhaps you want to help others prevent and treat complex diabetes, meaning their story will have a wide-reaching positive impact.
Finally, be sure to give participants the final say on what makes it into your marketing materials, whether they are a grateful patient who volunteered to share their story or someone your clinic approached. Allow them to review the text, video, or voiceover you plan to use, and incorporate any feedback they have. Give them the right to rescind their consent at any time if they decide they do not want to share their story.
2. Remain HIPAA-compliant.
HIPAA compliance is of utmost importance, but navigating these regulations can be confusing. For this reason, it’s always best to evaluate each storytelling opportunity on a case-by-case basis with a legal expert.
Before consulting a lawyer, however, there are some basic rules of thumb you can keep in mind when writing patient stories. Unless you have explicit permission to identify the subject, omit any of the 18 HIPAA-defined identifiers like name, dates, geographic locations smaller than a state, etc. Additionally, try not to include too many specific details that, when combined, could identify patients who wish to remain anonymous (e.g., mentioning a specific profession and diagnosis).
If you plan to use patients’ real names and medical information, you must obtain a valid, HIPAA-compliant authorization form where the patient agrees to release certain protected health information. This form should state exactly what information will be shared, with whom or where it will be shared (e.g., via digital marketing channels), what purpose it will be used for, and how long consent is valid.
3. Contextualize stories with Social Determinants of Health (SDoH).
Every health journey is influenced by various factors, or social determinants of health (SDoH), from genetics to environment. When telling stories about patients living with complex diabetes, avoid narratives that imply health outcomes are solely the result of personal willpower.
Instead, incorporate SDoH into your storytelling practices by:
- Highlighting barriers. Start by acknowledging factors like food insecurity, lack of transportation, or housing instability. Explain the impact that these factors can have on health outcomes and the overall patient journey.
- Removing the stigma around setbacks. Always be honest about complications—medicine is complex and rarely “perfect.” However, highlight complications as challenges exacerbated by systemic issues rather than personal or clinical failures.
- Showcase holistic support and treatment. Use storytelling to illustrate all the ways your organization provides whole-person care to address root causes rather than just symptoms.
Addressing these factors ensures your stories are realistic and transparent while still highlighting your organization’s strengths.
4. Tell realistic stories.
Incorporating SDoH can make your stories more realistic, but this is just one piece of the puzzle. Here are some dos and don’ts for telling realistic, ethical stories:
- DO:
- Focus on the individual’s agency and dignity, not victimhood.
- Stay realistic when discussing outcomes.
- Contextualize specific cases (i.e., discuss SDOH).
- Translate medical outcomes into lifestyle changes or human impact.
- Clarify the specific role donations and other forms of support play.
- DON’T:
- Play into the “savior complex” trap.
- Sensationalize or hyperbolize patients’ stories.
- Make unrealistic promises.
- Create composite characters (e.g., blending three stories into one character) without disclosure.
- Define the person by their diagnosis.
Additionally, aim to make your stories transparent and accessible to anyone. For example, do not intentionally twist statistics or attempt to mislead the audience with complex language or medical jargon. Consider having a team member who is not as familiar with medicine review the story and flag any points of confusion that should be simplified.
5. Frame narratives around dignity and strength.
The tone you use defines how the audience perceives the subject. Avoid victim narratives that elicit pity, and instead highlight the resilience of people with diabetes as they navigate their health journey.
Use person-first language, such as “people with diabetes,” to describe those in your care. Focus on the solutions you provide, including restoring quality of life and the importance of tech-enabled solutions and virtual care support. Minimize mentions of gruesome symptoms, and always use inclusive, non-labeling language.
Make sure these practices are clear and consistent across all the channels you share these stories on. To do this effectively, AGP recommends adopting an omni-channel approach that leverages a unified message you can make small tweaks to, depending on the target audience segment or communication channel (e.g., condensing a story for social media posts).
Storytelling is an effective way to humanize healthcare, raise awareness for the illnesses you treat, and shed light on what you do in an engaging format. However, telling stories in the healthcare sector demands certain ethical and legal steps, including securing informed consent, adhering to HIPAA, and acknowledging social determinants of health. These practices build a foundation of trust, leading to better outcomes for everyone.
