Navigating Copyright as a Patient Leader: An Interview With Gerry Langan

Being a Patient Leader in the chronic, terminal, and rare disease communities is no easy feat. You're constantly balancing managing your health and providing your community content, information, and support.

Imagine spending so much time creating content, only to have others steal it and repurpose it for their own. It's disheartening and infuriating. Unfortunately, through the Social Health Network, we see this happen too often. It's essential to do what you can to protect your content and your story.

Gerry Langan is an incredible Patient Leader focused on sharing her life and raising awareness about idiopathic pulmonary arterial hypertension (IPAH) and congestive heart failure (CHF). If you spend any time on Gerry's feeds, you'll know that she takes incredible thought, care, and pride in the content that she produces. It's apparent, and her love, light, and passion shows through every post, video, and story she publishes.

In this interview with the Social Health Network, Gerry talks about her experience as a content creator and how she handles copyright issues. We encourage you to connect with Gerry and learn more about her work through her Social Health Network profile.

To learn more about rules and regulations related to patient leadership, take the Health Union Patient Leader Certification program on the Social Health Network platform.

Social Health Network: What has happened to you in the past with your content?

Gerry Langan: I’ve had people take my content (posts, photos, and videos) and repost it to their pages without permission. I have had multiple different accounts take my photos and videos and use them for their own pages without my knowledge.

SHN: What do you do to get ahead of potential copyright issues?

GL: I have my disclaimers posted in my bio, Instagram highlights, and in my link in bio that states my content is copyrighted and to not use without permission. I believe it needs to be stated, or else people can easily say they didn’t know it was an issue.

How have you addressed copyright issues?

Once I notice that someone has taken my content without permission, I first give them a chance to delete it by sending them a message. If it doesn’t get taken down afterward I report it as copyright infringement, and Instagram usually takes it down.

I have been tagged in many reposts of my content, and I reply to the page and ask them to please remove it and explain why. Usually, people are happy to do so and apologize, but sometimes people will give pushback. In those cases, I will report it as copyright to the platform, and they usually remove it.

What advice would you give to another Patient Leader dealing with copyright issues?

I would say that you should, without a doubt, know your content is yours. You don’t owe it to anyone to give content away for free unless it’s something that you find can be beneficial for both parties. Your content took thought, time to make, and hard work, so you should remember that it has value.

As a content creator, it can be your source of income, and you should be paid appropriately for it. Someone wouldn’t take an ad from Nike and claim it as their own, so why would it be any different for your content? Content creators are still a new thing, and because of that, we have to protect ourselves in the best way we know how. Remember, your content is valuable. Do not let people steal your work or ideas without at least asking for permission first.

What else would you like to share?

Content copyright is hard to control. There will be times when you don’t catch it or times you think, "Well, it’s okay this time." Your content is valuable and it took time and energy to create, so remember to treat it as such.

Looking for an appropriate way to share a post? Use these Social Health Network best practices for doing so:

• Most social media platforms have built-in sharing features that make it easy to re-share content and automatically give credit to the creator. Look for these features and use them to ensure you are giving proper attribution.
• If you want to share someone else’s content but there’s no built-in feature for sharing, reach out to the creator and ask for permission before you share.
• Err on the side of caution. Do not re-share if you are unable to get permission or use a built-in sharing feature.