Video: Forming Your Online Disease Support Community

Transcript:

Voiceover: This program is made possible with the support and collaboration of Pfizer Oncology.

Carmen:  

Hello again! In the last video, we’ve walked you through HOW you get online using a browser and some websites that may be helpful and informative, including an explanation of the web addresses ending in dot gov, dot org and dot com.

Now, Quincy and I are going to explain how to join an online community that can help support you along the way.

Quincy:

For those people who haven’t heard the term before, an online support community is a group of people who share information, stories, support, and resources virtually.

Carmen:

Why should you connect with other patients online? For many patients and caregivers, joining an online support community makes them feel less alone. And the option of connecting virtually can sometimes allow people to communicate more honestly and openly.

Quincy:

You can also connect with your support community on social media platforms, such as Facebook, Instagram, and Twitter. These platforms can be accessed on your computer and via your mobile devices using an app.

  • What’s an app? App is short for “application” and gives you access to online tools in a more user-friendly way. We’ll talk more about apps, in-depth, in videos 5 and 6.

You’ve probably heard of them all–so, which one is right for you? I’ll explain the basics about the most popular social networks:

  • Facebook is the largest social media platform and is used to connect and communicate with family and friends. Facebook groups are focused on a particular topic.
  • Twitter allows people to send quick updates to their followers. Many medical experts and organizations have Twitter accounts to share their information and services.
  • You can use Instagram to share photos and videos with your network.
  • YouTube houses and distributes videos of all types, including educational information about health.

All of these platforms allow you to stay in touch with your friends and family, as well as connect with resources and information for your health.

Carmen:

There are also social media terms that you might have heard but don’t understand. Let’s review a few of them:

  • Follower – A follower is a person who subscribes to–or follows–your account to stay updated on your posts and activity.
  • Handle is a term that describes someone’s @ username on Twitter. You can come up with your own unique username. For example, my handle could be @DigitalCarmen.
  • Likes: On Facebook or Instagram, users can “like” your posts, which is a way for them to show their approval or interest. For example, if I shared a picture of my dog, people could “Like” it….Well, hopefully they would!
  • Hashtags: Hashtags are used to make information easily searchable. A hashtag is essentially the pound or number sign in front of a word or phrase in a post. You can click on a hashtag, and it will bring up all other articles or posts with that hashtag. For example, the hashtag #cancer will be used by people who post information to categorize the information for followers.
  • A blog is usually created and maintained by an individual or organization to share regular journal-style entries. Blogs can be opinion-based or more in the style of a news article. It can be a great way to learn about a topic. But keep in mind, it’s opinion-based – so do your own research and ask your doctor if you have further questions

Non-profit advocacy groups that focus on your specific cancer are also a great resource to help you connect with other patients and caregivers. In addition to online support, these organizations will often have in-person or phone resources that are easily accessible.

Quincy:

In the first video, Kara told you a little bit about the Patient Empowerment Network, or PEN. Their website, powerfulpatients.org, is a great place to start to access tools for speaking up and learning from other patients. And their Empowered Patient Chat group helps connect you to other patients and caregivers. You can “like” the Patient Empowerment Network on Facebook to learn more and stay connected.

Carmen:

Cancer Support Community’s MyLifeline also allows you to connect with other patients and caregivers 24 hours a day, 7 days a week.

This Is Living With Cancer is another resource provided by Pfizer Oncology that provides useful information and patient stories, to aid in the challenges one may face when coping with cancer.

Quincy:

An important note: While it’s great to go online for support from other patients, be sure you check with your doctor about any medical advice you receive online.

The tips we shared earlier about identifying credible information are useful for social media as well.

Carmen:

Now that you understand what an online support community is and the benefits of participating, in the next video, we’ll teach you how to set up profiles and find the best groups for you.

Quincy:

See you there!