When someone receives a life-changing diagnosis, they’re often thrown into a whirlwind of information. From leaflets to digital resources, patient support materials aim to help individuals navigate their diagnosis, treatment options, and future expectations. But let’s be honest—these materials can feel overwhelming.
“The golden rule is don’t make assumptions; actively listen to what patients are experiencing.”
This sentiment resonates deeply, especially for patients who must not only digest complex medical jargon but also explain it to their families. The need for clear, accessible, and empathetic resources is paramount for supporting both patients and their loved ones on this challenging journey.
Understanding Patient Needs
Clear communication is essential in navigating these difficult times. However, it’s equally important that these resources cater to the unique needs of each individual involved. In a world where medical terminology can be baffling, how can healthcare providers create materials that truly support patients and their families?
Charlotte Rowan-Green, medical director at Caudex, an IPG Health company, advocates for listening to patients.
“Patients are people first, diagnoses second.”
Every patient’s story extends beyond medical charts. They face unique challenges, relationships, and daily routines—all while managing their health. Just as every patient’s journey is unique, so too are their preferences for receiving and digesting information, especially when that information is complex and emotionally charged.
For example, one patient may prefer detailed written materials they can study at their own pace, while another might benefit from visual guides or interactive tools.
Lynette Arnell, operational manager at Pharmaphorum, shared her personal experience after being diagnosed with cancer:
“I couldn’t even concentrate on watching half-hour episodes of Coronation Street, let alone wading through a 30-page book on my diagnosis. It was too much.”
Her experience highlights the importance of respecting individual preferences. While some may prefer long-read formats, others may seek digital platforms or image-driven materials. According to Rowan-Green, the key is providing flexible options rather than a one-size-fits-all approach.
The Power of Tone and Language
Striking the right tone is equally crucial.
“It’s about balancing hope and positivity with the reality of the disease,” explains Katelyn Low, associate medical director at Caudex.
This delicate balance requires empathetic communication that makes people feel heard and supported—not just informed. The goal is to create materials that resonate with the whole person—their fears, hopes, and daily lives beyond the clinical setting.
Supporting Families and Caregivers
A health diagnosis doesn’t just affect the individual; it resonates throughout the entire family. Each member of the support network processes information differently.
As Arnell noted, her husband dove into research, while she felt overwhelmed. This dynamic requires thoughtful, tailored support materials that acknowledge the diverse needs of everyone involved.
Communicating health information to children presents its own challenges. Rowan-Green states:
“When you think about children versus an adult, their understanding of how the body works is very different.”
Arnell’s daughter received books from the charity Maggie’s, but she ultimately chose to use her own words to explain the situation. However, she noted a gap in support materials for young adults, which left her son seeking information through digital resources.
“The first thing my son did was watch YouTube videos of patients talking.”
This illustrates how vital it is for families to have access to appropriate resources that cater to various ages and learning preferences.
Evolving Materials for Ongoing Support
By viewing individuals as more than just patients, we gain insight into how they engage with healthcare information. Creating effective health materials means recognising that needs will evolve over time. Arnell emphasised the importance of a staged approach, enabling her to engage with support when she was ready.
“You need this kind of summary brief with bite-size snippets and key takeaways,” she advises.
It’s also crucial to provide practical tools that empower patients in real-world situations. Rowan-Green highlights how checklists can transform medical appointments:
“Making sure you leave with the information you needed without having to go to Dr Google is really important.”
Low’s team has implemented tools like doctor discussion guides, which help patients ask the right questions and keep track of important information during appointments.
A Diverse Approach to Resource Development
The format and delivery of information must be thoughtfully considered. Low points out:
“There can be print materials, infographics, pamphlets, one-pagers, and various digital formats.”
A key distinction lies between disease state education and materials focused on specific treatments or brands.
Engaging patients directly in the development process is essential. As Low notes,
“You want to speak to the people who matter in this.”
Feedback gathered from advocacy groups and congresses is invaluable in ensuring that resources resonate with the intended audience.
Continuous Improvement Through Patient Feedback
Creating effective healthcare materials doesn’t end with content creation. To truly make an impact, these materials must evolve to meet the needs of users. This may involve engaging with patients at congresses or through patient advocacy groups, as Low describes.
Rowan-Green adds that technology can enhance understanding:
“You can use tools to do social media listening and understand what they’re talking about in the forums.”
This patient-centred approach ensures that materials remain relevant and accessible, ultimately creating a “more non-scientific, but still accurate lexicon” that meets people where they are.
Conclusion
Designing person-centric healthcare materials is crucial for fostering understanding and support during a challenging time. By prioritising empathy and actively listening to patients, we can create resources that truly resonate. Let’s shift our focus from “patient” to “person,” ensuring that everyone receives the guidance and support they need.
Learn More:
- Empathy in action (https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/empathy-in-action/art-20314651)
- Patient support materials (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7491954/)
- Healthcare communications (https://www.healthaffairs.org/doi/10.1377/hlthaff.2020.00531)
- Accessible healthcare resources (https://www.who.int/health-topics/access-to-health-services#tab=tab_1)
- Effective health communication (https://www.cdc.gov/healthcommunication/toolstemplates/ABCguide/ABCguide.html)
