Skip to Content

Badges (1)


Twitter Name

Posts (176)

Nov 6, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

@merpreb, I'll talk about algorithms and privacy as two separate, but related issues. Algorithms affect (manipulate) what people see, who sees what and can influence behaviors. To develop algorithms, users' activity is tracked, patterns observed, and intentional and unintentional data on users is collected. Algorithms can help tailor things for users, i.e., films you might like to see on Netflix given what you've watched before. The imbalance of power is that algorithms know a lot about us, but we can't see the algorithms and how they work or are influencing us.

Privacy concerns are overarching. Facebook has changed a lot in their privacy settings and instructing users how to set their privacy settings. There is evidence that privacy settings can still be abused. For anyone interested in the privacy concern that @epatientdave raised during the debate at the conference, see this Twitter thread. In this thread Andrea Downing, admin of a Fb breast cancer group, compiles all the information about the #SICGRL data breach she discovered and brought to Fb's attention

Nov 4, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

I'd also love to hear from @michaelcvujovich @KimberlyGDATF @hackensackmeridianhealth and @lyndagmitchell on their experiences and considerations for patient communities.

Nov 4, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

@womenofteal Dee, you're so right. Misinformation can appear in any online community, regardless of the platform. That is where strategic community management is a necessity, meaning there needs to be an active, thriving group of people who have formed relationships and circles of trust. Where there is robust activity and membership, online communities are self-correcting. Community managers, moderators, admins also play an important role.

@merpreb, I highly doubt that Fb would actually delete the type of posts I hypothetically illustrated above. However, machine algorithms if set to encourage positive sentiment could overlook posts from people who need support the most because their needs are expressed using negative phrases. I don't actually think that this is Fb's intent as they realize the value of patient support in online health groups. It is my hope that they will apply different algorithm parameters for health-related groups than for other types of groups.

I put great stock in the experience and wisdom of Vaughn Hester, Health Partnerships and Roni Ziegler, Head of Health Strategy at Fb and look forward to watching the developments in the functionality of Groups. My concern remains that Facebook is a rental platform and that we just don't know what will change and how the data will be used.

Privacy is a real concern. Andrea Downing, admin of a Facebook group for BCRA wrote this article describing the data breach she discovered, how Fb did nothing to correct it and why it isn't a simple act to just leave the platform.
– Our Cancer Support Group On Facebook Is Trapped

Nov 4, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

I really appreciate your comments, @DanHinmon. Please note, I am not rushing to judgement by any means. I've been observing and actively contributing to the evolution of online health communities since 2006, which was before Facebook was a player in the patient community landscape. Naturally, I've been watching Fb's development of groups with acute interest. I'm fully invested in the value of online health communities as are you. On that point we completely agree.

Facebook invests incredible know-how and expertise in social network usability and functionality. They are certainly a space to watch and learn from.

Low barrier and seemingly free entry cost have been a great democratizer for individuals to start online communities on platforms like Yahoo, Ning and Facebook. Look no further than some of the examples that Dee named for robust Facebook groups that provide the connection benefits of which you speak. There is an absolute plethora of amazing things happening on Facebook groups.

My point is that free comes at a price. In the case of Ning, they started to charge for what was free. What Fb will do, we don't know. And therein lies my caution. Building a community in a rental space is precarious. (It's important to also note that paid platforms also have their issues. Take the example of Jive being bought by Lithium, which then merged with Spredfast to become Khoros. I know several flourishing online patient communities have been forced to migrate their members to a new platform despite paying for the platform.)

Even if Facebook doesn't allow ads in Groups (yet, and many are predicting they will), there are marketers offering advice on how to get ads into groups. Do a Google search for "ads in Facebook groups" and you'll be amazed.

I didn't say that Fb prioritizes bland responses, but rather that its AI and badging system incentivize positive sentiment and activity generating posts that may not be the goal of a patient support community. I can elaborate on this if anyone is interested.

Dan, you're right Facebook patient support groups can provide incredible benefits, even save lives. So how does a hospital navigate the shifting sands of a platform that is ever changing – sometimes for the good and sometimes for its financial gain – and still get the benefits of patient support? What safeguards do you recommend they put in place?

Nov 4, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

PS: In case anyone is wondering, Dan and I wholeheartedly agree on the importance of online patient communities. I personally think respectful healthy debate is constructive and instructive, and am enjoying this opportunity to examine and unpack your use of Facebook groups and communities on other platforms. I would really like to hear about your successes and why you like Facebook? Or do you feel hostage to it?

Oct 30, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

During the Facebook debate at last week’s MCSMN conference, I made the bold statement
“It is unethical, even dangerous, for hospitals to use Facebook Groups for peer-to-peer support groups.”

Given the rules of debating, my arguments were one-sided. I was playing a role. It is naturally more nuanced than that. Some hospitals are using Fb Groups very successfully for patient support. However, I warn that the Fb Group functionality as you know it now will not be the Fb Groups of tomorrow. Fb Groups are not the only option for online support groups. Before defaulting to Facebook, consider the landscape carefully.

1. Facebook is NOT free. Sure it appears to be free on the surface, but what are the hidden costs? As Facebook pivots their business model towards groups, I predict that even closed groups will be subject to more advertising and algorithms that will control who sees which posts in the group feed. Remember what happened to Pages.

2. Facebook’s algorithms typically favor positive sentiment. Ever noticed how the word “Congrats” appears in bold red?

Consider this scenario: A group member posts “I just finished chemo and rang the bell.” This post will undoubtedly get many likes and congrats, boosting it repeatedly to the top of the feed and garnering increasing attention. But what about the member who just joined and posted this? “Just had my second round of chemo. After a day of vomiting and nausea, it’s all I can do to write this post. I can’t go on.” Will Facebook suppress the negative sentiment? We don’t know. 

To quote a colleague, Michelle Hamilton-Page, “Facebook is like a serotonin hit from the candy of congratulations.”

3. Facebook rewards activity, but doesn’t recognize quality of posting. 

4. Fb Groups are pitiful at maintaining history and archiving collective knowledge. The Search function is mediocre. Rather than adding to an existing discussion that already has meaningful posts in it, the platform functionality encourages and rewards members who start new posts. Thus veteran members find themselves sharing the same beginner- or new-member information over and over again. They grow tired of this and move on. And you are left with a retention problem. Successful support groups rely on elders to mentor newbies.

5. With Fb Groups, you have little to no control over design, UX functionality or metrics to make the platform work for your community members. It’s a rental property. So you can’t evolve with the members as the sense of community deepens and matures. Facebook caters to the inception phase of a community, but good community management strives to move from inception to establishment to maturity.

6. Facebook has already proven unreliable in keeping information confidential. Closed groups give a false sense of security.

While at Facebook headquarters last January attending a Health Stakeholders workshop, I was very impressed with the Facebook employees as they shared their aspirations for the development of Groups in health and  learned from health community leaders. They genuinely want to do good because they have witnessed great things that happen when patients and caregivers share with each other. But if Groups become the core of Fb’s business, I worry about the lack of control you will have when connecting patients on a rental property.

What has been your experience with Facebook groups? There are great examples out there. I’d like to hear how you mitigate the concerns.

Do you or your clinicians ask to open a Facebook group? Do you? Should you? 

Oct 30, 2019 · "I'm not different from you I'm different like you" in Share

@truxtrains, I love the phrase "I'm different like you." Can I use that? My 5 words:

Embracing differences gets us started

Sep 30, 2019 · 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?