The Importance of Community in Healthcare

There is no escaping the head-scratching news coming from the executive offices of Twitter. It is a lesson on how not to handle a change in ownership. Every day companies and high-profile celebrities are announcing their departure from the platform. It’s a sad time for those of us who have found friends and sense of community on Twitter.

Given what’s happening, I though it would be interesting to discuss the importance of and the nature of community in healthcare. I hope the #hcldr community will join the next discussion on Tuesday December 6 at 8:30pm ET as we discussion the following topics:

  • T1 How important is community to healthcare? Is it a nice-to-have or something more?
  • T2 How might we continue to foster grassroots communities in healthcare?
  • T3 How can online healthcare communities avoid becoming echo chambers where like-minded people all agree on the issues and challenges?
  • T4 Outside of Twitter, what other online communities do you find useful/helpful (doesn’t have to be healthcare related)?

Communities in Healthcare

There is no doubt in my mind that communities are important to healthcare. All you have to do is look at the information and support that is shared in cancer groups and rare disease groups – both online and in-person. It is clear these communities are helping people who are newly diagnosed. It is a beautiful thing to witness.

The quality of information being shared is impressive. I’ve learned more about the diseases, the plight of patients, and the latest promising research from these by reading and lurking on these community discussions than I have reading journal articles. I have not participated in in-person versions of these types of communities, so I am only assuming they are equally as useful.

Of course, Twitter was the first platform that I discovered these communities on, but there are also vibrant communities on Facebook and LinkedIn too.

Here is a quick example of the communities for lung cancer:

Echo Chamber Danger

One of the biggest dangers for communities, whether in-person or online, is becoming an echo chamber where everyone agrees with each other and nothing new is shared. This is something we have actively tried to prevent from happening in the HCLDR community, but admittedly it isn’t an easy thing to do.

Communities by nature, attract like-minded people. When people feel their views are accepted, they will stay. When people with slightly different views are not made to feel welcome that’s when a community is in danger of becoming an echo chamber. Having said that, I do want to clarify that an different viewpoint is not the same as someone being abusive or derogatory to other members of the community – that’s not acceptable in-person or online. But I hope you can see how if left un-managed, there can be a progression to a state where everyone is within a narrow spectrum of viewpoints.

Some would argue that HCLDR has become an echo chamber…and from certain perspectives I can see why they would see that. After all, everyone in this community is passionate about improving healthcare and making the lives of patients better. If that’s as deep as you see, then yes, we are very much alike. But I say when you dig deeper, we are very different in our approaches and beliefs on how that is best achieved. That’s certainly one thing I love about the HCLDR community.

WIRED published a great article back in 2020 about how to break out of a social media echo chamber.

As the number of users on Twitter shrinks, the danger of becoming an echo chamber rises. With fewer voices, it’s harder to have a discussion with multiple viewpoints. To me that is where everyone on Twitter finds themselves. As the network effect that made Twitter so valuable diminishes, communities that remain on the platform will need to fight harder to remain helpful place for people to gather and exchange ideas.

I remain hopeful for the future of Twitter. I know it will not return to its former glory, but I’ve got my fingers crossed it will evolve and still be a place where a community like HCLDR can exist.

References

Seneca, Christopher. “How to Break Out of Your Social Media Echo Chamber”, WIRED, 17 September 2020, https://www.wired.com/story/facebook-twitter-echo-chamber-confirmation-bias/, accessed 6 December 2022

Cinelli, Matteo, et al. “The echo chamber effect on social media”, Proceeding of the National Academy of Sciences, 2 March 2021, https://www.pnas.org/doi/10.1073/pnas.2023301118, accessed 6 December 2022

“Avoiding Echo Chambers: 5 Strategies To Beat Confirmation Bias”, Forbes, 16 June 2021, https://www.forbes.com/sites/iese/2021/06/16/avoiding-echo-chambers-5-strategies-to-beat-confirmation-bias/?sh=bc8d8291267d, accessed 6 December 2022

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