Mission:
Share stories of the everyday existential angst of ordinary patients with chronic conditions.
Team:
Dr. Amar Dhand, Dhand Lab: https://www.dhandlab.com/
Miss Farah Yousry, Side Effects Public Media: https://www.sideeffectspublicmedia.org/
Dr. Jay K Joshi, Daily Remedy: https://www.daily-remedy.com/
Goal:
- Write stories of patient journeys
- Study how the stories become viral
- Monitor follow-up clinical engagements
Pilot Phase Plan of Action:
- Jay will identify and obtain consent from patients in NW Indiana, where he currently practices medicine, who are interested in sharing their stories as patients navigating through a complex healthcare system.
- Journalists from Side Effects Public Media, under the leadership of Farah, will interview and showcase these patients. Interviews will take place at Jay’s clinical practice and at the patients’ homes.
- Stories written will be published through Side Effects Public Media and their syndicate media outlets.
- Stories will be monitored for engagement, including traditional metrics such as views, read-time, back links, and other SEO metrics traditionally used to define virality.
- Select readers will also be asked to provide more detailed feedback on the story. The feedback would entail a brief questionnaire gleaning reader perceptions of the story. It would be administered once the selected reader has completed the story.
- This questionnaire is a modification of the Reysen Likability Scale. It uses Likert formatting to determine how likely a reader is (1) to spread the story and (2) to engage with the patient in the story.
- We will cross reference the questionnaire with the traditional engagement metrics to determine if we can identify elemental components in the journalistic framework of telling a patient story that leads to virality.
Key Elements to Include in Stories:
- What does the patient want?
- What’s getting in the patient’s way?
- What are some workarounds that the patient’s exploring?
- What is the broader pattern here?
- What is the news and health policy impact?
Key Perspectives to Incorporate in Stories:
- In sharing patient narratives, we “create something greater”. We foster a community of patient engagement, supporting one another.
- The concept of emergence is important: patients become advocates and advocates build communities. How can we observe and monitor this manifestation?
- In this project, the patients are the experts. The doctor is simply a facilitator for patients in their clinical journey. We are privileged to listen to the patient stories.
Sample Questionnaire [DRAFT]:
How likely are you to share this article across social media? Please use a scale of 1-5, where 1=not at all likely and 5=extremely likely.
1 | 2 | 3 | 4 | 5 |
Not at all likely | Not very likely | Neutral | Somewhat likely | Extremely likely |
○ | ○ | ○ | ○ | ○ |
How well do you relate to the patient in this story? Please use a scale of 1-5, where 1=not at all well and 5=extremely well.
1 | 2 | 3 | 4 | 5 |
Not at all well | Not very well | Neutral | Somewhat well | Extremely well |
○ | ○ | ○ | ○ | ○ |
How well do you relate to the clinical condition covered in this story? Please use a scale of 1-5, where 1=not at all well and 5=extremely well.
1 | 2 | 3 | 4 | 5 |
Not at all well | Not very well | Neutral | Somewhat well | Extremely well |
○ | ○ | ○ | ○ | ○ |
How likely are you to comment on this article on social media platforms that you normally engage with? Please use a scale of 1-5, where 1=not at all likely and 5=extremely likely.
1 | 2 | 3 | 4 | 5 |
Not at all likely | Not very likely | Neutral | Somewhat likely | Extremely likely |
○ | ○ | ○ | ○ | ○ |
How likely are you to post or comment on this article on social media platforms that you don’t normally engage with? Please use a scale of 1-5, where 1=not at all likely and 5=extremely likely.
1 | 2 | 3 | 4 | 5 |
Not at all likely | Not very likely | Neutral | Somewhat likely | Extremely likely |
○ | ○ | ○ | ○ | ○ |
What specific aspects of the patient story do you agree with? Rate each of the below on a scale from 1-10, where 1=least likely to agree with to and 10=most likely to agree with.
1 – Least likely to agree with | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 – Most likely to agree with | |
The patient appeared credible | ||||||||||
The patient appeared trustworthy | ||||||||||
I could relate to the patient | ||||||||||
I liked the patient | ||||||||||
I could relate to the clinical condition | ||||||||||
The article appeared credible | ||||||||||
The writer appeared fair and balanced | ||||||||||
I advocate for the clinical condition discussed | ||||||||||
I’m active on social media discussing this clinical condition |
Key Questions to Determine in Pilot Phase:
- Are there elements in the story construction that influence virality?
- Are there select patient stories that elicit stronger emotional responses than others?
- How strongly does virality correlate with the clinical poignancy expressed in the article?
- Are there other factors, such as clinical relatability as opposed to personal relatability, that influence virality?
I love that you’re doing this Dr. Joshi! At a moment in time when medicine and country seem to be washing their hands of complex patients, you are stepping up in a way that sets you apart as a truly caring person, provider, researcher extraordinaire. Thank you.