Discussions

Should hospitals use Facebook Groups for online patient support?

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? 

You make excellent points Colleen. I am a member of a few Ovarian Cancer groups not run by hospitals. I check in now and then usually in support of newcomers and to share scientific articles / info. I find there is some misinformation on these sites which need to be corrected. Long time members will take that on. I find the groups BRCA Advanced and other Hereditary Cancers Journal Club and Beyond the Pink Moon to the excellent for information and support and their moderators are good at screening etc. Christina and I ( #gyncsm community ) considered a Facebook group but with the privacy issues decided to not create one at this time. If I were a hospital I would look at other platforms, check if there is way to use it through a patient portal or work with my tech department to create the space tailored to my patient needs.

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Colleen- In the instance of one person beginning chemo and an other finishing it would be ideal for the person finishing to counsel the other. I shudder at the thought that FB would delete the "negative." The person finishing shows hope to the one who just started, even as ill as she was. I would hope that FB sees the underling message that can be made of this and not cutting the possible story here out.

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There are some useful cautions in this post, @colleenyoung, but in your rush to judgment I fear you've overlooked the key benefits of a Facebook patient support group. Patients, families and caregivers need and value support while they're going through difficult times, and hospitals can bless their lives and build loyalty with effective online support groups.

Let's not let perfect be the enemy of the good. Facebook actually is free, and the barrier to entry is very low. Much better to provide a Facebook support group than nothing. The cost of buying and customizing a platform for a patient community is tens of thousands of dollars. Most hospitals won't do it. Why not start with a FB group, even with its limitations, and build the community to the point where there is support to move to a neutral platform?

And speaking of limitations, many of your warnings are speculative. Right now there are no ads, the search function is actually quite good, and there is no evidence that FB is prioritizing bland responses in the feed, As far as fears about how information could possibly be shared, pin a post with rules and cautions and patients can make their own decisions about how concerned they should be.

In full disclosure, I wear two hats. Besides my role as community manager here, I manage Hive Strategies, a firm that provides expert advice for Facebook support groups. (See my MCSMN blogpost for a personal reason about why I feel so strongly about these groups: https://socialmedia.mayoclinic.org/2019/06/11/remarkable-opportunity-to-make-a-profound-difference/?utm_campaign=search And my webinar on How to Start and Grow a Successful Facebook Patient Support Group https://socialmedia.mayoclinic.org/webinar/how-to-start-and-grow-a-successful-facebook-patient-support-group/?utm_campaign=search).

Bottom line: Even with all its warts, a Facebook patient support group is an incredible gift — sometimes even a miracle —when it connects people and information at the time of greatest need. Hospitals can play an important role in providing these connections.

Who can share an experience, good or bad, with Facebook support groups?

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@womenofteal

You make excellent points Colleen. I am a member of a few Ovarian Cancer groups not run by hospitals. I check in now and then usually in support of newcomers and to share scientific articles / info. I find there is some misinformation on these sites which need to be corrected. Long time members will take that on. I find the groups BRCA Advanced and other Hereditary Cancers Journal Club and Beyond the Pink Moon to the excellent for information and support and their moderators are good at screening etc. Christina and I ( #gyncsm community ) considered a Facebook group but with the privacy issues decided to not create one at this time. If I were a hospital I would look at other platforms, check if there is way to use it through a patient portal or work with my tech department to create the space tailored to my patient needs.

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@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 https://tincture.io/our-cancer-support-group-on-facebook-is-trapped-f2030a3c7c71

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@dahinmon

There are some useful cautions in this post, @colleenyoung, but in your rush to judgment I fear you've overlooked the key benefits of a Facebook patient support group. Patients, families and caregivers need and value support while they're going through difficult times, and hospitals can bless their lives and build loyalty with effective online support groups.

Let's not let perfect be the enemy of the good. Facebook actually is free, and the barrier to entry is very low. Much better to provide a Facebook support group than nothing. The cost of buying and customizing a platform for a patient community is tens of thousands of dollars. Most hospitals won't do it. Why not start with a FB group, even with its limitations, and build the community to the point where there is support to move to a neutral platform?

And speaking of limitations, many of your warnings are speculative. Right now there are no ads, the search function is actually quite good, and there is no evidence that FB is prioritizing bland responses in the feed, As far as fears about how information could possibly be shared, pin a post with rules and cautions and patients can make their own decisions about how concerned they should be.

In full disclosure, I wear two hats. Besides my role as community manager here, I manage Hive Strategies, a firm that provides expert advice for Facebook support groups. (See my MCSMN blogpost for a personal reason about why I feel so strongly about these groups: https://socialmedia.mayoclinic.org/2019/06/11/remarkable-opportunity-to-make-a-profound-difference/?utm_campaign=search And my webinar on How to Start and Grow a Successful Facebook Patient Support Group https://socialmedia.mayoclinic.org/webinar/how-to-start-and-grow-a-successful-facebook-patient-support-group/?utm_campaign=search).

Bottom line: Even with all its warts, a Facebook patient support group is an incredible gift — sometimes even a miracle —when it connects people and information at the time of greatest need. Hospitals can play an important role in providing these connections.

Who can share an experience, good or bad, with Facebook support groups?

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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?

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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?

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@colleenyoung

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?

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Thanks so much, @colleenyoung for your comments and clarifications. As you explain so well, the world of online patient communities is diverse and sometimes frustrating. A clear understanding of the pros and cons prior to starting is so important. Skilled management of the community is essential for success. I'm glad you started this discussion.

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@colleenyoung

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?

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Glad you added this P.S., @colleenyoung. I have great respect for your experience and knowledge, and this exchange is definitely in the spirit of sharing and learning. The work you do with Mayo Clinic Connect is benefitting so many lives. I too am interested in others' experiences with Facebook specifically. Are you involved with a FB patient support group at your hospital or clinic? If so, what has been your experience? If not, what's holding you back? Who in your organization is responsible to start and manage these communities?

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@DanHinmon, @colleenyoung– I do not use FB for any health related advice or medical information. I do not trust them at all as far as confidentiality goes. Being a mentor for Mayo Connect is testimony to my opinion of on-line communities as long as it is a community with certain goals that are not harmful and are truthful. I do feel hostage to FB because they have so much information on all of us. Nothing is sacred anymore. I have a FB page called Lung Cancer. I share quips about life and cancer.

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@merpreb

@DanHinmon, @colleenyoung– I do not use FB for any health related advice or medical information. I do not trust them at all as far as confidentiality goes. Being a mentor for Mayo Connect is testimony to my opinion of on-line communities as long as it is a community with certain goals that are not harmful and are truthful. I do feel hostage to FB because they have so much information on all of us. Nothing is sacred anymore. I have a FB page called Lung Cancer. I share quips about life and cancer.

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Thanks for your commitment as a Mayo Clinic Connect mentor, @merpreb. You are doing important work there. In spite of your concerns about FB privacy, you manage a Lung Cancer page. Why do you feel comfortable with that? Have you set guidelines for content there?

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@dahinmon

Glad you added this P.S., @colleenyoung. I have great respect for your experience and knowledge, and this exchange is definitely in the spirit of sharing and learning. The work you do with Mayo Clinic Connect is benefitting so many lives. I too am interested in others' experiences with Facebook specifically. Are you involved with a FB patient support group at your hospital or clinic? If so, what has been your experience? If not, what's holding you back? Who in your organization is responsible to start and manage these communities?

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

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@dahinmon

Thanks for your commitment as a Mayo Clinic Connect mentor, @merpreb. You are doing important work there. In spite of your concerns about FB privacy, you manage a Lung Cancer page. Why do you feel comfortable with that? Have you set guidelines for content there?

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Hi Dan- I'm comfortable with my FB page called Lung Cancer because I'm not selling anything, pushing anything or including anything controversial on purpose. It's only me and some worldly words.

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@colleenyoung

@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 https://tincture.io/our-cancer-support-group-on-facebook-is-trapped-f2030a3c7c71

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@colleenyoung– Do you really believe that if FB applies different algorithm parameters for health-related groups, privacy will still be a question?

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@merpreb

@colleenyoung– Do you really believe that if FB applies different algorithm parameters for health-related groups, privacy will still be a question?

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@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. https://threadreaderapp.com/thread/1192131232886190081.html 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

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