Video: Overcoming Obstacles to Quality Cancer Care: What Resources Are Available?

Carmen:

Hi! It’s Carmen and Quincy back again with another video in the Digitally Empowered series, brought to you by the Patient Empowerment Network.

Throughout this series, we’ve been explaining how partnering online resources and support with self-advocacy may improve your care.

Quincy:

But sometimes there are hurdles that are too big for a patient to deal with on their own. These are called health disparities. In basic terms, this means that people receive different healthcare based on their circumstances, which may have a negative effect on their medical experiences and outcomes.

So, in this video, Carmen and I are going to walk through common issues people may face and highlight services that can help.

Carmen, what are some common health disparities?

Carmen:

Quincy, let’s start with a basic issue—where a patient lives. If you live in a rural area or if you rely on public transportation, getting to appointments, traveling to an academic medical center—or even finding a provider you like—may be more difficult.

Quincy:

Very true, Carmen, but there are services that can help. For example, The American Cancer Society has a “Road To Recovery” program that provides free rides to medical appointments for cancer patients. You can find out more about this service on their website at cancer.org [URL on Screen].

And, as we covered in previous videos, virtual appointments can allow you to see specialists or physicians via your smartphone or computer. This can assist with transportation challenges, too.

Carmen:

And, if a patient does need to travel a long distance for treatment or appointments, they may need to stay overnight. Lodging can be an extra expense that is difficult to cover. Several advocacy groups have resources to help with the cost of hotel stays, CancerCare and Joe’s House, to name a few.

And speaking of expenses, Quincy, are there resources to deal with the overall financial burden of living with cancer?

Quincy:

This can be a struggle for many people, but there are advocacy groups that can assist. Let’s review a few:

• The Patient Advocate Foundation provides financial aid and case management services to patients.
• The PAN Foundation, or the Patient Access Network Foundation, is a group that helps people pay for medications and to access treatments that they need.
• And Triage Cancer is an organization that provides free education on the legal and practical issues that one may face when diagnosed with cancer.

Carmen:

Those are great resources, Quincy!

Another barrier for some can be language. For people whose first language isn’t English, it can be more difficult to understand disease information, to make decisions, and to access services. Especially at larger medical centers, there should be someone on staff to offer translation services and to be available upon request.

And if you need additional help, there are advocacy groups that provide educational materials and support in several languages, including the Patient Empowerment Network. The content on PEN’s website is available in more than 100 languages.

I should also add that a social worker at your medical center is another member of your healthcare team who can help you navigate the challenges of cancer care. If you’re unsure about any of the services mentioned in this video or just want more information, ask your social worker.

Quincy:

That’s good advice, Carmen.

Unfortunately, racism and bias can still exist alongside ALL of these other obstacles. If you don’t feel heard or don’t feel you are receiving good care, consider getting a second opinion or speaking with someone you trust on your team.

Carmen:

That’s a great point, Quincy. When dealing with your healthcare team, you should always feel safe and comfortable.

And the Patient Empowerment Network is devoted to improving the patient-provider relationship. Their EPEP program provides healthcare professionals with the tools to encourage shared decision-making and to connect patients in underrepresented communities with resources to help them overcome barriers.

Quincy:

Right! And nothing should stand in the way of you getting the best care.

Let’s review what we’ve learned:

• First and foremost, a social worker should be able to direct you to services that provide assistance for any of the issues you may face.
• If you live in a remote area or don’t have access to transportation, there are services to get you where you need to go.
• And, there are organizations that can assist with the financial stress of living with cancer. From insurance questions to coverage, these groups are devoted to supporting patients.
• And, advocacy groups like the Patient Empowerment Network, offer educational content in multiple languages if English is not your first language.
• And, finally, consider changing doctors if you feel uncomfortable in any way with your provider. You should be at the center of your health decisions.

Carmen:

We hope this helped and thanks for tuning in! Don’t forget to download the guide that accompanies this video which includes a list of the resources we discussed.