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Mon, Sep 30 7:47am · 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?

Wed, May 22 10:57am · Responding to patients with printouts, what's best? in Give & Get Advice

In my opinion, the article is a good start. I believe the authors' intent is well placed. While the case study is illustrative, it is limiting and has led to this fruitful conversation. It is nearly impossible to apply a construct (the 3 "R's") to patient-provider conversations, although I do like the distinction of well patients, newly diagnosed and those managing chronic conditions. That information is useful for understanding the motivation of the patient's search for answers and will inform the response as well.

How might we illustrate the complexities, help the busy clinician and benefit the patient with ever-compressed consult times?

Mon, Apr 29 4:01pm · Experts By Experience Free E-Book Released

'Tis true that online publishing, photo editing, music writing programs have given the opportunity to many to become proficient at skills that only a few years ago were the sole domain of those who had completed extensive education. Merely having an opinion and having a platform via social media to express it, does not make one an expert.

On the other hand, published or unpublished there are thousands, nay millions, of patients and family caregivers who have developed an experiential expertise of their condition and health journey – an expertise that is complementary to the medical expertise of the health provider. Together providers, patients and family members bring knowledge, experience and expertise to diagnose, manage, problem-solve and much more.

This discussion harkens to a recent blog post by Susannah Fox, former CTO at Health and Human Services, called (provocatively) "Paging fans of Dr. Google"

The post refers to the oft cited coffee mug with the quote “Don’t confuse your Google search with my medical degree.” Many people posted comments offering a counter phrase. I like this one: "Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it."

While the juxtaposition of these 2 statements appears to be combative, I'd like to think they can be compatible if the demeanour is changed to be cooperative rather than staking ground. "Let's use your medical expertise with my experiential expertise to assess my medical status and get the best health outcome we can."

Thu, Apr 4 10:59am · Welcome Basic members! Looking for advice... in Give & Get Advice

There isn’t an optimal length. Both too short and too long are not good. Be sure to give enough information to help people understand the context of the question or problem. If you have a lot to share, use paragraph breaks and/or bullets to structure the information and make it easy to read.

Wed, Apr 3 3:36pm · Welcome Basic members! Looking for advice... in Give & Get Advice

If you have a burning question, I guarantee you that at least 5 other people are wondering the same thing and at least 50 people didn't think to ask. You are doing the community a great favor by asking questions. Consider it knowledge collection.

1. Before starting a new discussion, do a quick search to see if the question has been asked before.
If yes, then add a comment to that thread. Let's keep like topics together.
2. Got a new question? Be specific in the title. It helps everyone.
3. You've got knowledge too. While the focus has been on helping to answer your questions, I bet you've got solutions. Read through past discussions and add your nuggets of wisdom.

What are good things to share?
1. Case studies
2. Problems: issue that need solutions
3. Success stories: we'll celebrate with you
4. Lesson learned: Did you do a social media face plant? Share how you recovered. They are the best lessons for everyone.

Welcome everyone!

Mon, Jan 21 9:53am · How Mayo Clinic’s Patient Community Changes Health Care and Advances Science

Hey @lyndagmitchell, please post the name of your community and a link. I'd love to learn more about it. It's not self-promotion but sharing of valuable resources.

I learn a lot from fellow online community builders like @rozeiger (SmartPatients) @johnnovack (Inspire) @michellehp (Heart & Stroke Foundation) and so many others. I also go outside of health to learn. Have you heard of Feverbee? Or the Community Roundtable? Or CMX? Happy to provide links if you're interested.

Thu, Jan 17 3:49pm · How Mayo Clinic’s Patient Community Changes Health Care and Advances Science

Hey @epatientdave, thanks for answering questions along the way!
Mayo Clinic Connect is a public forum. As such, anyone can read the conversations. However, we do not aggregate, share or sell data about members to third parties. Period. Mayo Clinic does not use member data without member consent.

I describe further here:

Thu, Jan 17 3:39pm · How Mayo Clinic’s Patient Community Changes Health Care and Advances Science

@lzipperer, my background is in patient education (oncology). Moderating online patient communities completely transformed my writing approach. It seems normal now but a decade or more ago, patient education was gleaned from clinicians and focused on what the patient needed to know. It has been a huge paradigm shift to include experience expertise into patient education materials and to include what patients WANT to know.