What You Can Learn from Patients about Stories and Social Media

Mayo Clinic Social Media Network 2019 Annual Conference

Patients from Mayo Clinic Connect will be a part of "Patient Panel: What do Patients Want to Know? Ask Us...Anything" at the Mayo Clinic Social Media Network 2019 Annual Conference. To learn more from them and other expert speakers, please join us!

Are your patient stories resonating with your audience? How do you know? Here’s your chance to ask a panel of patients and caregivers.

Stories engender empathy. They help us connect. Patient stories are indispensable to health care communications and marketing, branding and beyond. What does it take to tell a good patient story and have it shared?  

Patients and caregivers participating in online social spaces and sharing their health stories is arguably the single, most transformative aspect of health care and social media. Through the social web, patients and caregivers can connect quickly with a wide network of other patients and caregivers, as well as with you and your organization.

At the 2019 #MCSMN Annual Conference, four patients and caregivers, John Bishop, Teresa Bowers, Rosemary Huckleberry, and Scott Phillips, will reflect on patient-targeted social media that engage and why they’re good. They’ll also share their pet peeves about examples that miss the mark. 

Let’s get the conversation started here. Help the panel prepare by answering these questions and asking your own. 

  • What do you find challenging when sharing patient stories?
  • What impact do you hope patient stories will have?
  • What questions do you want the patient panel to answer?

When evaluating patients physicians have been taught a well defined system which includes 1. CC (Chief Complaint), 2. HPI (History of Present Illness 3. PMHx (Past Medical Hx), etc….

The bottom line is we have a system which acts as a checklist which we hope will generate a narrative, or a story, for which we can get a handle on the patients as a person.

The system isn't perfect ( for example, perhaps we need to shed the word ‘complaint” because, let’s face it, who likes a complainer), but when you do it well, when you understand someone’s story, you can start to see patterns, and you can remember really important things from 20 years ago to bring to bear today.

Stories from the past can sometimes bring hope – for example, Ive seen a patients with Stage 4 cancers who have survived long term, so I know rare things can happen.

Stories can also save lives. For example, I have seen young triathletes and runners with a panic attacks and chest pain who were also having a pulmonary embolisms ( a good reminder that just because someone is having anxiety or a panic attack doesn’t exclude the possibility of them also having a pulmonary embolism, no matter how healthy, so always at least consider PE for chest pain, …)

Anyway, stories may not be the end all or be all, but neither are MRIs, or biopsy results, or lab tests. Each have a type of truth, and each may be equally valuable in helping people.

By the way, I happen to be rather ambivalent on Electronic Health Records, and one of the reasons is I don’t believe they are very good at capturing people’s story – in fact, I think they drift towards dehumanization.

COMMENT

Re: the questions I'd like the panel to answer: I'm quite interested in their opinions about when patient testimonials DON'T work. When should we avoid using them? When do they appear inauthentic? Do they have examples of stories that have turned them off or even caused them to look elsewhere for care?

COMMENT

Hi Dan @DanHinmon, I've never seen a patient story that has turned me off although I've seen a few healthcare ads that I kind think – that's nice but wouldn't the ad money be better spent by reducing the cost vs. advertising. That's just my personal opinion though and I've never seen one like that from Mayo.

Patient stories that I really like are ones where the patient has been successfully treated and there is an incentive type ad urging me to followup or check if it might be something that affects me.

COMMENT
@johnbishop

Hi Dan @DanHinmon, I've never seen a patient story that has turned me off although I've seen a few healthcare ads that I kind think – that's nice but wouldn't the ad money be better spent by reducing the cost vs. advertising. That's just my personal opinion though and I've never seen one like that from Mayo.

Patient stories that I really like are ones where the patient has been successfully treated and there is an incentive type ad urging me to followup or check if it might be something that affects me.

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Thanks, @johnbishop. Look forward to seeing your presentation in a few weeks!

COMMENT

Here's an article which came out yesterday about patient stories and EHRs:

AI needs patients’ voices in order to revolutionize health care https://www.statnews.com/2019/09/30/artificial-intelligence-patients-voices/

COMMENT
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