Video: How Advocacy Groups Can Help You

Carmen: 

Hi! Welcome back.  

Quincy: 

We’re so glad you are here. When you are living with cancer, finding support and resources can help you feel more empowered to ask questions and to share your care goals with your doctor.  

Carmen: 

Yes! And in this video, we are going to talk about patient advocacy groups—which are organizations that are there to provide you with the support and resources you need for navigating life with cancer.  

Quincy:  

It’s important to note that many of these groups are non-profit organizations, which means they do not make a business profit, and they are run by a board of directors to help them establish and meet their goals.  

Carmen, can you review the most common types of advocacy groups in the cancer space? 

Carmen: 

Sure!  

Some groups, like the Patient Empowerment Network, focus on empowerment and education. By visiting these sites, you can learn about the basics of your cancer, read information about treatment, and hear the latest research straight from experts. And learning more about your cancer can empower you to have a voice in your care decisions. 

Other groups spotlight financial services—everything from assisting patients with insurance questions to finding assistance programs. 

There are also groups that focus on the emotional aspects of living with cancer and provide access to support groups and help lines. Keeping your mental health in check is important when facing a cancer diagnosis, and these groups can help you during the tough times.   

In one of our other videos called “Joining and Participating in an Online Disease Support Community” we talked about the benefits of talking to other patients. Rewatch it to find out how joining a support group may help you.  

And, many advocacy groups are also involved in increasing disease awareness, advocating for positive changes to the healthcare system, and raising money for research. 

Quincy:  

Let’s not forget to mention that there are advocacy groups that are focused on care partners—they also need to feel supported.  

And the Patient Empowerment Network has a Care Partner Toolkit that encourages care partners to take part in decisions, prioritize their own self-care, and access resources to help them all along the way. 

Carmen, what else can you find on an advocacy group website? 

Carmen:  

Great question! Advocacy groups typically host plentiful information on their websites. From webinars to articles to downloadable guides, their resources can allow you to better understand your cancer and encourage you to be more involved in your care. 

And for newly diagnosed cancer patients, PEN created the START HERE program, which uses PEN’s resource library to help create a treatment plan that’s right for them. 

Quincy:  

Let’s walk through what you might find on a patient advocacy website.  

• Typically, like you see here, the navigation at the top of the page is the area that lists the organization’s resources and services.
• If you scroll over this section called “For Patients,” you can see what disease information is available.
• “Events” is another common link at the top of an advocacy group’s page and will display upcoming events, including webinars, that you can watch online to learn more about living with cancer.
• If you’re interested in learning more about the mission of the organization, or the board of directors, the About page lists this information.
• And the homepage typically includes a link to subscribe or sign up for newsletters. If you fill out your contact information, you will get an email as they release new information or services. 

Carmen:  

That’s very helpful, Quincy! Advocacy group websites should be simple to get around. If you aren’t seeing the services you are looking for, you can always use the search box. 

Quincy:  

Right! OK, so what did we learn in this video: 

• First, patient advocacy groups are there for you when you need support, information, and resources.  
• And these groups can help you connect with other patients and peer support. 
• They are also involved in advocating for positive change and raising funds for research. 
• Advocacy group websites should be easy to navigate—but use the search function if you aren’t able to find what you need. 
• Finally, ask your healthcare team which advocacy groups they recommend as a good place to start. 

Carmen:  

Thanks for tuning in! Don’t forget to download the guide that accompanies this video to find a list of resources and to review what you learned. 

Quincy:  

See you on the next video!