Telling Powerful Patient Stories - Beacon for Rare Diseases Lightning Talk
•Download as PPTX, PDF•
0 likes•18 views
A volunteer mentor for Beacon for Rare Diseases and an advocate for a rare infant airway disorder, is learning how to write better patient stories (from Pip Decks and her own experience as a marketer) and sharing some tips with other rare patient group leaders in a lightning talk on 15th June 2023. Image credits to Unsplash.
Recommended
More Related Content
Similar to Telling Powerful Patient Stories - Beacon for Rare Diseases Lightning Talk
Similar to Telling Powerful Patient Stories - Beacon for Rare Diseases Lightning Talk (20)
Recently uploaded
Recently uploaded (20)
Telling Powerful Patient Stories - Beacon for Rare Diseases Lightning Talk
- 2. How can you tell a memorable story?
- 3. 1 Craft your story. Listen to everyone you can first. Separate actions and emotions. Visualise in a timeline. 2 Adapt your story. You don’t tell it the same way for journalists ‘v’ clinicians. Or with short ‘v’ long film, or copy editorial ‘v’ news. 3 Repeat those messages. People are busy and surrounded by noise. Give them a clear message, over and over again. Get the impact you need, in any format.
- 4. First, you need a hook…
- 5. Secrets & Puzzles Be clear about the puzzle you are trying to solve. People will want to close the gap. Reference: Storytelling Pip Decks
- 6. The patient story at the core…
- 7. 3 Crisis 1 Comfort Zone 4 Recovery 2 Trigger 5 Better Place Man in a Hole
- 8. And, what you want them to do…
- 9. The Dragon & the City Reference: Storytelling Pip Decks Your plan to lead the city in fighting the dragon = action! Reference: Storytelling Pip Decks
- 11. Accurate diagnosis Describe the patient in a journey, to create the impact. Funding > Communication Funding > Research Puzzle Story Action Effective treatment Lack of awareness
- 12. Make alliances where you can…
- 14. Reach out to me on LinkedIn… www.linkedin.com/in/kirstieheneghan
Editor's Notes
- Want to share a little bit that I’m learning along my own journey to become a patient advocate for my own rare disease, while I mentor one of you.
- I’d like to talk to you about telling patient stories – I’m a marketer, a Mum of a child who had a rare condition as a baby, and so now an advocate for you all.
- Then no matter where you go with that story, the message repeats itself throughout and you are able to consistently drive that message to the right people.
- Keep your eye on the goal, but also find the differences that are unique to your patient group. Focus in on the secret or puzzle where a difference can be made, and you are not boiling the ocean.
- Create impact with your story by crafting it as a scripted narrative with relatable elements, and emotion. Protect patient information by anonomising, including all relevant factors and identifying differences to the norm. Be clear about what you want to achieve - who you are reaching, and what you want them to do to help you.
- You will come across a lot of closed doors, or nodding faces that then don’t into action. So how do you influence? Try this as the door opener. City It is good but it might be wasteful, someone is in charge and needs to be persuaded to act. You are the knight, but you are telling the story to raise support from the army. This is also who you are influencing when you reach out to leverage new channels. Dragon The threat, the disease and decline of health. We want to understand it, and also see what magic it holds - we might need to fight against it, or use it as an opportunity to help people (does this disease hold a key insight that is more universally applicable and useful, or is it linked in some way to other issues that will help gain a resolution). Conflict Being the exception to the rule in your rare scenario, you are defending humanity being in control of our healthcare issues by attacking the dragon - to alleviate symptoms, make improvements to diagnostics, or progress innovation.
- In this structure example, you can use it for a number of variations on (for example TikTok 9:16 can be shared across YT shorts, FB reels too)
- You will always need data, evidence. Facts to ground your data against, ways of making it relevant for the channel audience to get their attention.